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A study published by the Journal of the American Medical Association finds that treatment with opioids was not superior to treatment with non-opioid medications in patients with chronic back pain, hip or knee osteoarthritis pain.

You can find the full study here: http://ow.ly/veOf30iO8ms

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Exploring the challenges and successes that patients, parents and healthcare professionals encounter when pain in adolescents

To listen to this programme, please click here.

This edition was funded by a grant by the Agnes Hunter Trust

Going through adolescence can be a difficult process for anyone, but for young adults with chronic pain the difficulties of these formative years can become multifaceted. With 8% of young people in the 13-18 age range affected by chronic pain (15,000 living with arthritis alone), the transition to adulthood, and the medical support that accompanies it, is an important process. In this edition of Airing Pain we explore the challenges and successes that patients, parents and healthcare professionals encounter when entering this crucial period.

Pain management consultant Dr Mary Rose and nurse Mandy Sim of the Royal Hospital for Sick Children in Edinburgh speak to Paul Evans about the methods they use to make the transition into adulthood as supportive as possible, as well as the importance of educating patients, parents and schools on the biopsychosocial aspects of pain and its management.

Dr Alison Bliss, paediatric anaesthesia and chronic pain consultant at Leeds Children’s Hospital, emphasises the importance of finding a balance between cultivating independence in young-adults with pain and helping them find the support in their transitional period.

Paul also speaks to Dr. Line Caes, psychology lecturer at Stirling University, touches on the nuances in dealing with how young people see themselves in comparison to their peers and making the classroom a more accepting space.

Issues covered in this programme include: Alcohol, arthritis, children and young people, chronic pain as a condition in its own right, chronic primary pain, depression, drug abuse and misuse, family, mental health, pacing, peer support, relationships, self-harm and youth services.

Paul Evans: This is Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and for healthcare professionals. I’m Paul Evans, and this edition has been funded by a grant from the Agnes Hunter Trust.

Dr Alison Bliss: Quite a lot of paediatric services are funded and set up, up to [a child’s] 16th birthday. But then a lot of adult services don’t start until their 18 years. So if you’re a teenager with chronic pain, [in] that sort of 16 to 18 age gap, where do you get your help from?

Evans: Chronic pain affects eight per cent of young people within the 13 to 18 age range in the UK. And to put that into perspective, 15,000 of those live with arthritis, and that’s just one condition.

So in this edition of Airing Pain I want to focus on what happens to the care and support for those with chronic pain conditions when – according to classification – they are neither child nor adult. So when does childhood stop and adulthood start?

Dr Mary Rose is a consultant in the pain management clinic at Edinburgh’s Royal Hospital for Sick Children.

Dr Mary Rose: Well there are legal definitions, in that you stop becoming a child at the age of 16, although you’re able to give consent in Scotland from the age of 12 onwards. But practically when we’re managing children and young people, I think we recognise that there’s a distinct group, particularly the 16 to 23 or 25-year-old age group. These are what I would consider young adults rather than children, in that they have very distinct needs from children, yet there’s still a lot of psychosocial development going on between the ages of 16 and 23, so that doesn’t always fit very well with the model of care that we have.

Evans: Dr Mary Rose. And that model of care, to the outsider at least, seems rather baffling.

Dr Alison Bliss is a consultant in paediatric anaesthesia and chronic pain at Leeds Children’s Hospital.

Bliss: When our service was originally set up we were funded for 16 years, and quite quickly we realised that actually [for] quite a lot of teenagers that’s the time when they develop pain. They have nowhere to go, so we expanded our service up to 18 years. And for the vast majority of young people we hope that, while they spend their time with us, they learn the life skills and the self-efficacy that help to address their problems, so that pain doesn’t go on to be a problem into their adult life. But there will be some young people for whom pain is a problem, [and] we haven’t got on top of it yet; they’re going to need a bit of extra help. And it’s all about trying to make a joined up path, so they know where they are going to get their help from, they know where they are going to get their care from, who’s going to support them as they move out of the children’s services and into the adult services.

Evans: Now it’s interesting you use the word children’s, because the last thing a teenager would want to be called is a child. There’s enough going on in a teenagers mind, from memory.

Bliss: Absolutely. It’s the difference, isn’t it, between the absolute horror of being sat in a waiting room full of snotty nosed children, with bits of coloured plastic sitting around everywhere, or being sat in a waiting room full of old people looking at posters advertising walking aids and incontinence aids. You don’t really fit in to either of those worlds.

But also we know that teenagers who have chronic pain, because it’s coming at that crucial time when they’re trying to find their sense of self, they’re at a higher risk of doing risky things. Sometimes that can be from the self-harming aspect of things, if their moods are low, but also in terms of social things, for instance we know that they’re at higher risk of having unprotected sex, not thinking through their decisions, trying alcohol and drugs; this is the time of life when it happens. And so we’ve really got to engage with the young people, and make sure that we stay engaged and that I can hand over to somebody who is also going to be engaged, because if they feel like medicine is just dropping them, then they’re less likely to come to appointments, they’re less likely to follow advice, they’re more likely to go off and undertake these risky behaviours.

Evans: What’s going on that makes them do these risky things?

Bliss: I don’t think anybody knows exactly what’s driving that, but there are some themes that we think are becoming really apparent. So we know that if you’re in pain every day and there’s nothing to see for it, there’s that sense that you’re not being believed and that makes you feel very isolated and alone. And if you have a condition that means you can’t keep up with your friends, you can’t walk round town all day, you can’t get out and do these activities, then, again, it’s that sense of isolation. And sometimes it’s desperation: people don’t believe me, they don’t know what I’m going through, I’ve got no other way of letting out these emotions.

And so when I see young people in my clinic the first time I meet them, I meet them alongside my clinical psychologist, and a part of that consultation is about thinking about the impact of pain on mood, and how low that mood gets. And how they’re coping with that, and where they’re accessing any help and trying to pick out right from the start anyone who is at risk from those self-harm ideas and thoughts, and whether there’s anyone there to help support them through that.

Evans: One of the things about being a teenager is actually, you don’t want Mum sitting next to you when personal things are happening in your life, but you do need that support, but you’d like it to be invisible.

Bliss: Yes, one of the big things about being a teenager is [that] it’s that one time in your life when you’re struggling to find your own sense of self, and you desperately, desperately don’t want to stand out from anybody else. And for teenagers with chronic pain that’s really hard because you have something that makes you disengage to a certain extent, you can’t do the things that you’re friends do, but they can’t see a reason why. And then it’s hard to talk about it to your friends, hard to talk about it at school or college. And so quite a lot of our young people go through a lot of unnecessary suffering because they don’t know how to share that information with the people around them, to find the support they need, and the independence they need at the same time. It’s a mix of both things.

Evans: It’s hard for parents as well.

Bliss: It’s very hard for parents, particularly for parents who’ve now got teenagers that started out as a young child with a chronic condition, where for a long time they’ll have been working super hard being the advocate for their child, making sure their child gets all the help they need. And sometimes accessing chronic pain services for children is quite tricky because there aren’t so many of us around, so they may have had to battle for a long time. And for us to turn around and say, ‘and now it’s OK to let go’ – that’s a hard process, and it’s about making sure that if we start that from the paediatric side of things, we’ve got a counterpart waiting to pick up and carry on that process on the other side. So we’re becoming increasingly aware of it, but up until the last couple of years it’s really been patchy about what happens for these new adults.

Evans: But is it as simple as that then, you’ve finished one service, you’re 17 on the Monday, you just turn up and say where do we pick up from here?

Bliss: It’s very difficult. We recognise that actually for a lot of our young people it’s not based on chronological age. We see some 18-years-olds who are about to possibly go to university, but have been very much still in that shared responsibility of the family – they’re not used to making decisions by themselves, they’ve been in full time education, they’ve been experiencing life as an older child. And for them really to say, that’s it off you go into adult land, that’s quite hard. Whereas actually we’ve got some 16-year-olds that are already seeking independence, they’ve decided they’re moving out from school, they’re going to college, some of them are making plans to live independently. Which they’re allowed to do, that’s fine, and for them actually they are ready for adult services possibly that little bit earlier. It’s trying to find the right balance, and ultimately what you can access in your area to a certain extend depends on what you’re funded for, and that’s where we have problems.

Evans: That’s Dr Alison Bliss, consultant in paediatric anaesthesia and chronic pain at Leeds Children’s Hospital.

Dr Mary Rose again.

Rose: As well as having to deal with all the changes that everybody going through adolescence deals with, these young people are having to deal with the fact that they have a chronic disease that impacts on their ability to go to school and their ability to socialise with their peer group. Any young person, as they become an adolescent, they have an awful lot going on. All the changes with puberty, and the pushing the boundaries and risk taking – although I think there’s a tendency for patients who have a chronic condition, [who] sometimes may have been a bit held back, then they’ll be less independent, less likely to be showing some of the age appropriate behaviours. So there’s a degree of wanting to normalise that with patients that we see.

We do provide quite an ongoing service to them – they’re able to contact the pain management nurses, they can phone up when they need to – and I think just by the nature of the pressure on adult services, that kind of ongoing availability of support isn’t there. I think [with] the adult services, a patient will be seen in adult services and then generally advice [will be] given to their GP as to how they should be managed. So we’re very aware of that when we are seeing young people, and aware that they may transition on to adult services, [we’re] making them aware that the services will be different.

Evans: Adults faced with pain management issues, self-management issues, would think about things from an adult point of view – well, hopefully – a much more mature point of view. Getting over self-management messages [to young adults], pacing and things like that, it’s a bit more complex isn’t it?

Rose: It is, and I think it’s key to what we do in the clinic. I think one of the most important things that I do, rather than prescribing medicines, or referring to physiotherapists, is giving the formulation, and explaining the biosocial model for pain. And that’s how I draw in why self-management techniques work, I give quite detailed explanations about pain transmission and why techniques such as relaxation and distraction and psychological therapies do have a role.

Evans: Doctor Mary Rose.

Mandy Sim is a pain nurse specialist at Edinburgh’s Royal Hospital for Sick Children. So what are those self-management techniques and messages she reinforces to patients and parents?

Mandy Sim: Medication is not a long term answer. The use of relaxation techniques have to be practiced, it’s not something you become good at straight away. So I would always encourage them to maybe build it into their night time routine, so you’re practicing it, which might also have an impact on your sleep. But it also means that by practicing these techniques, when you’re having a bad day, you automatically go straight into these techniques and you’re not having to overthink about how to do [these techniques], because you’re obviously thinking about that, but your mind’s busy because you’re sore, so it becomes second nature to them. So these techniques have to be practiced, I think that’s the big message.

And this is not something that you’re going to get through to these young people on your very first appointment with them. But we know these children sometimes for a number of years. So you build up a relationship, you build up a rapport with them, and at that stage they’re more likely to listen.

Evans: So you’re growing the relationship with them – when they go to the secondary school, when they cease to become children and become young adults, you’re actually growing with them.

Sim: Yeah, absolutely. And it’s not [that they] come to clinic and then we don’t have any contact with them again till the next clinic. We pick up the phone, [and say] ‘we saw you six weeks ago at [the] clinic, how’s the treatment that we introduced that time?’ There is a rapport building up, the families feel that you’re interested in them because you’re picking up the phone to find out how you’re getting on. With the young people, ideally I try to speak to them directly, rather than just going through the parents, so again you’ve got that rapport, and that relationship building with them.

Rose: I suppose the other key important message is that you use self-management strategies and exercise, regardless of whether the pain is there or not; you don’t wait for the pain to go away and then start doing this.

Sim: These strategies also, they’re lifelong and they support the young person, not just with their pain, but any stressful experiences in their lives, so sitting exams, sitting their driving test, moving away from home. So these strategies they’re learning, they’re not just relevant for pain, they’re relevant for so many things in their life.

Evans: That was Mandy Sim.

Now with the biosocial model for chronic pain, the two social environments a child spends most time in are home and school. Doctor Line Caes is a psychology lecturer at the University of Stirling’s school of natural science. Her research interests are in the psychosocial aspects of children’s pain.

Dr Line Caes: Children don’t live with their pain on their own, they share it with their parents, [and] parents respond to their child’s pain. But also children actually spend quite a lot of time in school, even when they’re in pain, so we’re looking at how teachers are dealing with that, and how teachers can be supportive of a child who has chronic pain.

Evans: So that’s very interesting, because most chronic pain conditions are invisible.

Caes: And for these kids that is a bit of a mixed bag, because they do want to be like every other child, they don’t want to be treated special. So the fact that pain is invisible is important in that sense; but on the other hand, because it is invisible, when they really need help it’s also difficult sometimes to get help, and to get heard because somebody is saying, ‘but you were dancing yesterday, and this morning you can’t be in school and write your essay, so what’s going on there?’ So because it’s invisible it’s difficult to get heard and to get help when they need help.

Children can live as normal a life as possible even if they have chronic pain, and it’s actually important that they learn to be normal children, and we call it learning to be resilient. And you can laugh if you have chronic pain, you can have joy, you can have pleasure, you can go out with your friends. I think the most important thing for these kids with chronic pain, is that we realise that they have to pace themselves more. So yes they can go out at night, they can play with their friends, but probably the next day they’ll have to rest and do more relaxing. And that’s what we call pacing: they can’t [exert themselves] every single day, they’re not having an extended amount of energy, they need to rest and compensate for [it] if they went out with friends, for example.

Evans: That’s good advice I’m sure for the person with pain, for the child or adolescent with pain. But of course it’s two way travel: the teacher, what should they know?

Caes: We interviewed eight teachers, across seven different schools, to see what they want to know. They had experience of having a child in their classroom with chronic pain for at least one year, and we asked them, ‘what would you want to know, what were you missing, to help that child in an effective way?’ And they do say training – ‘we need to know practical tips on how to handle the chronic pain in the classroom’ – because the main thing that teachers now do is they pick up the phone and they call the parent and say, ‘your child is really not feeling well and you need to come and pick her up and take her home.’ But they realise that that’s actually detrimental, that’s negatively affecting their academic performance, their ability to engage with their peers and have social interactions, and learn from those social interactions.

So they really want to be trained on helping those children with chronic pain. And I think one thing is to learn that it’s invisible and you can’t always immediately see what’s going on, so you really need to check in with the child every now and then, [ask them] ‘how are you doing?’ And that pacing, it isn’t because yesterday that child was looking well and was taking part in the class, that [therefore] the next day it will be the same; [the] next day can be entirely the opposite. So I think learning that it can switch in a second, and switch quite quickly for a child with chronic pain, is one of the important things to learn.

Evans: As you said, a child, or a teenager, an adolescent wants to appear normal, but there’s always the danger that having coached the teacher, if you like, how to deal with this, he or she is pulling that child out of the normal group and setting them elsewhere.

Caes: That is a tricky balance to find. One example was, for instance, a child that we spoke to who had juvenile idiopathic arthritis, and have difficulties walking up the stairs, so the school allowed her to use the elevator – but she’d rather crawl up the stairs that use the elevator, because she was the only child in her class allowed to use the elevator and she didn’t want to stand out.

So it’s finding that tricky balance, and I think from the interviews we did with the teachers, they had actually quite nice suggestions I hadn’t thought of. The teachers have a curriculum they have to teach, they have a whole lot of biology they have to address, [of] geography [and] history, and they were like, ‘why don’t we have a curriculum about pain, a whole set of materials that we can put in the curriculum and teach the whole class about pain, and about what chronic pain is, that children can also get chronic pain, and children can also get juvenile idiopathic arthritis and it’s not just a disease for old people.’ Then they were like, ‘you can pay attention to the child, you don’t have to point the child out, but you [can] address chronic pain with the entire class as part of the curriculum, and everybody is learning about chronic pain and how to deal with chronic pain.’ And I think all children can benefit from it. And so you’re addressing the needs of the child with chronic pain without pointing the child out and having it stand out in the class. And when we were talking with the teachers [I thought] that’s brilliant, I hadn’t thought of that?

Evans: Well it is a fantastic idea, but I think many teachers would say yes it’s a fantastic idea, but this is just another burden on the overcrowded curriculum?

Caes: But in the one sense it’s already a very busy curriculum, but now they have to address a child with chronic pain, they have to address the needs of the child with chronic pain, in addition to that overcrowded curriculum. So they were saying probably something has to make space for adding that to the curriculum – fair enough, everything is important. So there is always making that balance, but now it’s coming into addition there anyway, and the teachers realise that there’s more and more kids with pain, or with disabilities in the classroom, and there’s more and more prevalence and it will become probably more and more prevalent in the future. So that is one thing that they feel is possible to address, becomes now it comes in addition to that busy curriculum.

Evans: Doctor Line Caes of Stirling University in Scotland. That particular study of hers was done with primary school teachers, but the results do concur with other studies involving secondary schools.

Now, pain education in schools is not as fanciful as you might think. Mandy Sim, a pain nurse specialist at Edinburgh’s Royal Hospital for Sick Children, is at the front line – or the coal face if you like – of support for the Pain Management Clinic. And the front line does indeed reach into her patient’s classrooms.

Sim: It is giving them support to cope with changes that they’re going through. Supporting them with being able to engage with their peer group, with education; supporting the schools to understand what the physical condition is, what the needs of the young person are, and being able to put things into place to support that child to get into school, to get their education, to get their peer group, and get them socialised so they can become the young adult that they’re going to become.

Evans: So you’re talking to the world around the young adult?

Sim: Yeah, absolutely – so involving parents, involving the school, are there are community services available. And sometimes even the peer group. So I have been known to go into the class and speak to the class about chronic pain, how it affects young people, how they behave when they’ve got pain and some of the treatments that we use to help them manage their chronic pain.

Evans: So what would you tell them?

Sim: I speak to the young person who is concerned, and say, ‘do you want your peer group to know that I know you, or am I just coming out as this is my role?’ So I will explain what my role is, talk about chronic pain, try to engage the class to get them to say what sort of things might cause pain, how might I know has somebody got pain. It’s a very two-way session that I do. And then [we] look at things that we would do to provide some pain relief for the young person, to get them into school, and hopefully to get their peer group to understand that you don’t have to have a plaster on your arm, you don’t have to have a scar, to have pain. It might be something that’s actually quite invisible, but actually you could have pain that’s there every single day.

Evans: I remember talking to a friend who was a wheelchair user and her showing me round her old school. Things that I thought were absolutely fine, simple things like timetabling, you can be [in] room one for something, then your next lesson [is] in room ten. And nobody’s taken into account the one stair that you have to get through. So the whole aspect of dealing with people with physical disabilities has to be rethought.

SIm: Well we look at things like getting out of class early, so they’re missing the hustle and bustle of the corridor, potentially having a buddy that can support them through the corridors, maybe having two sets of books, so they’ve got a set of books that’s at home and a set of books that’s in class so they’re not having to carry books back and forth. So there can be lots of what we’d perceive as quite simple fixes, but it makes a huge difference to the young person.

Evans: It’s a lot of thought isn’t it, and yet again, not a lot of thought, to sort these things out.

Sim: And it’s that face-to-face, or that telephone communication with the teacher, and that [communication] – [whether] I’m phoning from the pain clinic, I’m phoning from the hospital – that opening line of the communication makes such a difference to the young person, [knowing] that they’ve got that level of support.

Rose: I think a really important message that you get across is that these young people are going to have good days and bad days as well, which we sometimes find the schools struggle to understand: why a young person one day can do lots of things, but then for the next few days they can’t.

Evans: It seems to me that young people might get better treatment in that respect, from the biopsychosocial [aspect], from the social aspect; young people may get better treatment than adults.

Sim: Yeah, I think from the social, and the engaging with the peer group and education. I don’t know what goes on in adult services, but I would possibly agree.

Evans: Well for somebody with chronic pain – I have chronic pain – the thought of somebody coming in and explaining to my friends and colleagues, and my bosses what is going on, would have been very helpful.

Sim: And the feedback that we get from both schools, from the young person concerned and from the parents, [shows] they very much appreciate that on the coal face front, coming out and speaking to people and being visible, they find that very helpful.

Evans: That was Mandy Sim.

Here’s Doctor Alison Bliss, consultant in paediatric anaesthesia and chronic pain at Leeds Children’s Hospital again.

Bliss: Adolescents, they’re a group in their own right, and we need to up our game really.

Evans: How do you do that?

Bliss: It’s about trying to make it a process, so we’re now starting to change the environment that we see these young people in: giving them information right from the start, to say, ‘it’s OK if you spend a bit of time with us, without mum and dad there – we can split our consultation so that you can come and talk to me by yourself, or talk to our nurse by yourself, and then we’ll join mum and dad in and help manage things on.’ Because when you go out into adult land, you’ll be asked to go in by yourself, and the amount of support you get from your parents is going to lessen.

Evans: That’s Doctor Alison Bliss in Leeds Children’s Hospital.

What about Edinburgh? Doctor Mary Rose.

Rose: We would definitely continue to see them once they remain in full time school education, so we’re happy to see them up to 18. If we get a new referral for a patient aged 17 or so, we say, ‘if we see them they’re not going to stay in our service very long.’ So we may prefer them to start their journey in adult services, which I realise is quite tough for these young people. So when we do transition we always make contact with the adult chronic pain services first of all. And they are – certainly within Edinburgh – there’s one of the consultants [who] has an interest in young people in this age group, and also one of the psychologists does as well, so we’ll be in touch with them before, and we’ll do a joint appointment as the first appointment as well. So that we can be clear about the purposes of the transition, what we’re expecting from transition, so that the young person and their family feels supported when they do start attending adult services.

Evans: Having, as you’ve said, grown with these young adults from possibly a very early age, they might feel cocooned and loved, and [then] that carpet is taken away from them, that loving feeling.

Sim: Yeah, and it’s something that we’ve been very aware of. We’ve kind of grown with them over the years, and as we’re getting closer to that transition, there are maybe slightly fewer phone calls; we’re just trying to promote a bit more self-management so they’re not going from phone calls from the pain team every six weeks to ‘off you go into adult services.’ So it’s like letting your child go: you’re just giving them a little bit more independence, yeah, managing their own symptoms a little bit more. We’re there in the background, you can contact us if there’s any problems, but [still] just giving [them] that bit more independence as we’re coming up to transition.

Evans: That’s Mandy Sim, pain nurse specialist at the Royal Hospital for Sick Children in Edinburgh.

Now as always I have to read you the small print, that whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances, and therefore the appropriate action to take on your behalf.

Don’t forget that you can download all editions of Airing Pain – this is number 99 – from Pain Concern’s website, which is painconcern.org.uk. And there you’ll also find Pain Concern’s extensive resources and support, information leaflets, self-management videos, our forum and much, much more. Once again, it’s painconcern.org.uk. And do follow up on Twitter, Facebook and other social media platforms for the latest news and information.

Now, I just want to end this edition of Airing Pain with advice for parents whose children – or are they adults? – anyway, young adults, as they leave paediatric services. Doctors Alison Bliss and Mary Rose.

Bliss: There are some things that you need to support them and let them do these things for themselves, and give them that little bit of independence as they’re going along, and that’s hard. It’s hard when you’ve had a child with a chronic condition, a teenager with chronic pain, [who] are often a lot more dependent on their parents that the typical teenager. And it’s being able to find that right balance to support the young person as they gain increasing independence and to support the parents, to say at times it’s OK to let go.

Rose: It’s hard being a parent anyway, [even] if your child doesn’t have a chronic condition, so I recognise it must be even harder for parents of children and young people with chronic conditions to let them go and to encourage them to become more independent, but it’s the right thing for them to achieve their full potential.


Contributors:

  • Dr Mary Rose, consultant at the pain management clinic at Edinburgh’s Sick Children’s Hospital
  • Mandy Sim, pain nurse specialist at Edinburgh’s Sick Children’s Hospital pain management clinic
  • Dr Alison Bliss, consultant in paediatric anaesthesia and chronic pain at Leeds Children’s Hospital
  • Dr Line Caes, psychology lecturer at University of Stirling’s School of Natural Science, researcher in paediatric psychology and psychological aspects of children’s pain.

More information:

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

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In pain? Don’t understand what’s happening?

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

Exploring the challenges and successes that patients, parents and healthcare professionals encounter when pain in adolescents

This edition was funded by a grant by the Agnes Hunter Trust.

Going through adolescence can be a difficult process for anyone, but for young adults with chronic pain the difficulties of these formative years can become multifaceted. With 8% of young people in the 13-18 age range affected by chronic pain (15,000 living with arthritis alone), the transition to adulthood, and the medical support that accompanies it, is an important process. In this edition of Airing Pain we explore the challenges and successes that patients, parents and healthcare professionals encounter when entering this crucial period.

Pain management consultant Dr Mary Rose and nurse Mandy Sim of the Royal Hospital for Sick Children in Edinburgh speak to Paul Evans about the methods they use to make the transition into adulthood as supportive as possible, as well as the importance of educating patients, parents and schools on the biopsychosocial aspects of pain and its management.

Dr Alison Bliss, paediatric anaesthesia and chronic pain consultant at Leeds Children’s Hospital, emphasises the importance of finding a balance between cultivating independence in young-adults with pain and helping them find the support in their transitional period.

Paul also speaks to Dr Line Caes, psychology lecturer at Stirling University, touches on the nuances in dealing with how young people see themselves in comparison to their peers and making the classroom a more accepting space.

Issues covered in this programme include: Alcohol, arthritis, children and young people, chronic pain as a condition in its own right, chronic primary pain, depression, drug abuse and misuse, family, mental health, pacing, peer support, relationships, self-harm and youth services.


Contributors:

  • Dr Mary Rose, Consultant at the pain management clinic at Edinburgh’s Sick Children’s Hospital
  • Mandy Sim, Pain Nurse Sspecialist at Edinburgh’s Sick Children’s Hospital pain management clinic
  • Dr Alison Bliss, Consultant in Paediatric Anaesthesia and Chronic Pain at Leeds Children’s Hospital
  • Dr Line Caes, Psychology Lecturer at University of Stirling’s School of Natural Science, researcher in paediatric psychology and psychological aspects of children’s pain.

More information:

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Public Health England is launching a review into “growing problem” of prescription drug addiction.

The review, which will take a year, will cover:

  • sedatives and anti-anxiety drugs known as benzodiazepines and z-drugs (zolpidem and zopiclone)
  • painkillers called opioids, pregabalin and gabapentin (the latter two are also used to treat epilepsy)
  • antidepressants

Article – BBC website

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“Having chronic pain is very lonely.”

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What is the IASP Global Year of Excellence in Pain Education, and how does pain management research benefit the patient?

This edition is funded by Pain Concern’s donors and friends, assisted by an educational grant from Grünenthal.

The International Association for the Study of Pain (IASP), formed in 1973, is the leading forum of scientists, clinicians, healthcare providers and policy makers supporting and promoting the study of pain and using that knowledge to improve pain relief worldwide.

Each year IASP focuses on a different aspect of pain that has global relevance. In 2017, IASP focused on pain after surgery, and joint pain was the focus of 2016. In this programme, Paul Evans speaks to Dr Paul Wilkinson, lead of the IASP force of the 2018 Global Year of Excellence in Pain Education.

IASP hopes to advance the understanding of pain in the areas of government, professional and research education and ultimately create strategy to communicate the gaps in pain education globally.

Paul also speaks to clinical psychologist Dr Nicholas Ambler, patient trainer Lisa Parry and assistant psychologist Sareeta Vyas at the Bristol Pain Management Programme to find out if there is a correlation between investment in pain management research and development and patient benefit.

Issues covered in this programme include: Availability of pain services, CBT: cognitive behavioural therapy, chronic primary pain, educating healthcare professionals, funding of pain services, GP, insomnia, policy, online resources, sleep compression and volunteering.


Contributors:

  • Dr Paul Wilkinson, Director of pain management services in Newcastle and lead of IASP 2018 international task force
  • Dr Nicholas Ambler, Clinical Psychologist and lead of NHS North Bristol Pain Management Programme
  • Lisa Parry, patient and patient trainer at NHS North Bristol PMP
  • Sareeta Vyas, Assistant Psychologist and leader of sleep management programme at NHS North Bristol PMP.

More information:

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

In pain? Don’t understand what’s happening?

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

What is the IASP Global Year of Excellence in Pain Education, and how does pain management research benefit the patient?

To listen to this programme, please click here.

This edition is funded by Pain Concern’s donors and friends, assisted by an educational grant from Grünenthal.

The International Association for the Study of Pain (IASP), formed in 1973, is the leading forum of scientists, clinicians, healthcare providers and policy makers supporting and promoting the study of pain and using that knowledge to improve pain relief worldwide.

Each year IASP focuses on a different aspect of pain that has global relevance. In 2017, IASP focused on pain after surgery, and joint pain was the focus of 2016. In this programme, Paul Evans speaks to Dr Paul Wilkinson, task force lead for the 2018 Global Year for Excellence in Pain Education.

IASP hopes to advance the understanding of pain in the areas of government, professional and research education and ultimately create strategy to communicate the gaps in pain education globally.

Paul also speaks to clinical psychologist Dr Nicholas Ambler, patient trainer Lisa Parry and assistant psychologist Sareeta Vyas at the Bristol Pain Management Programme to find out if there is a correlation between investment in pain management research and development and patient benefit.

Issues covered in this programme include: Availability of pain services, CBT: cognitive behavioural therapy, chronic primary pain, educating healthcare professionals, funding of pain services, GP, insomnia, policy, online resources, sleep compression and volunteering.

Paul Evans: This is Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and for health care professionals. I’m Paul Evans, and this edition is funded by Pain Concern’s donors and friends, assisted with an educational grant from Grünenthal.

Dr Paul Wilkinson: If all health care professionals in the field of pain did one hour of education for one day in just one year, in terms of the number of people that would be reached, it would make a very significant difference.

Evans: The International Association for the Study of Pain, or IASP as it’s known, brings together scientists, clinicians, health-care providers, and policymakers to stimulate and support the study of pain and translate that knowledge into improved pain relief worldwide. They have nominated 2018 as the Global Year of Excellence in Pain Education.

Dr Paul Wilkinson, who is Director of the Pain Management Service in Newcastle in the UK, is lead for the international task force for the project.

Wilkinson: The Global Year for Excellence in Pain Education is divided into four main areas:

  • Patient education
  • Professional education
  • Public and government education
  • Pain education research

The cornerstone of the Global Year for Excellence in Pain Education will be a web-based resource which will have educational resources for professionals, for patients, for public and government and to facilitate education research. But resources are not much good on a website; we have to lift them off the website and there will be strategies to try to communicate the needs, the gap in pain education through the world.

One key example would be that there is an absence of minimal essential training for healthcare professionals in pain management in hospitals and healthcare institutions.

There was an important publication in Canada and [it] was being replicated in other countries that showed that the educational provision to healthcare professionals was less than [to] vets. Obviously, the inference there was that maybe animals were getting the better deal than humans. So that was a strong statement for what needed to be done in in pain education.

Evans:  So how will the Global Year address that?

Wilkinson: It’s got a multi-prong specialty covering the different areas of education.

With patient education, we are providing a series of resources that will improve patient education, using the most up-to-date research.

For professionals, there is a launch of a number of curricula and resources to try and help professional development. In addition, we want minimum essential training for all health care professionals.

Related to public and government education, we want to carry the messages to government and make public aware of the problems that the patients suffer with and the lack of resources through the world.

Finally, as well as trying to bridge the gap between what we now know and what we do, we would actually like to know more, so pain education research is an important part of the Global Year.

Evans:  Now you’re based in the UK, you work in Newcastle with the NHS.  Is there something you can learn from other countries, sharing of information, if you like, and other countries can learn from you?

Wilkinson: Absolutely. The dissemination of different experiences is an important part of the Global Year for Excellence in Pain Education. The International Association for the Study of Pain values this in part of its work. There are positive experiences of treating different conditions in different parts of the world. It’s really important that new developments are shared across countries and between countries.

Evans:  When we speak again in a year’s time, what do you hope will have happened?

Wilkinson: I hope that every person with pain in the world would know the kind of resources that are available to help them. We want governments through the world to recognize pain as a disease and to provide the resource to ensure the well-being of their population.

Evans:  You brought up an interesting point of governments recognising pain. Well, is chronic pain a condition, or was it just a result of some other condition?

Wilkinson: Well, there are two types of pain, broadly speaking, acute pain and chronic pain. These may not be the best terms, but that’s what we use medically. Acute pain is pain that follows injury. It’s closely related to injury, it’s proportionate to level of injury – as the injury heals, the pain resolves.

What I think people don’t know, is that where pain persists, yes it may be due to a problem, it may be due to a rheumatological condition (rheumatoid arthritis) that’s not resolved, but most commonly, it occurs in its own right. It’s a disease in its own right, there are changes that occur in pain parts of the nervous system, which mean that when injuries heal, instead of the pain going as injury gets better, the pain unfortunately stays.

Sometimes we recognize these injuries because we know the accident occurred. But sometimes these injuries are small, they occur through our lifetime and lead to persistent back pain or persistent neck pain, taking away the life that we’d had previously.

In fact, one of the starting points of the Global Year is to try to improve our understanding of pain better through patient stories. So the Global Year of Excellence in Pain Education is starting with patients, putting patients in the middle.

Evans:  That education side from the patient’s point of view, explaining what pain is and what’s available there, that’s something that I hope we in Pain Concern can contribute to this Global Year of Excellence in Pain Education.

Wilkinson: Absolutely. And I hope that this will contribute significantly to education in promoting the Global Year.

Evans: That’s Dr Paul Wilkinson, lead of the International Association for the Study of Pain’s task force of their Global Year of Excellence in Pain Education. You can keep up to date with all that’s happening throughout the year at IASP’s website which is https://www.iasp-pain.org

And don’t forget that Pain Concern contributes substantially to patient and healthcare education through its information leaflets, helpline, magazine, campaigns and of course these Airing Pain podcasts.  This is 98 by the way – that’s nearly fifty hours of information about living with and managing chronic pain, from leading authorities in their field – be they healthcare professionals and researchers or expert patients. You can download all editions from Pain Concern’s website which is www.painconcern.org.uk

It’s probably best not to listen to all 50 hours’ worth in one go, which brings me to the small print that, whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Now, advances in pain medicine and pain management can cost an awful lot of money in terms of research and development and they can take years to roll out. But is there a correlation between investment and patient benefit? Pounds per points on the pain score if you like?

Dr.Nick Ambler: There’s a goldmine here. It really is something that could make a massive difference to the way in which people sustain the gains, sustain the momentum of a pain management programme. That’s our feeling, there really is something to mine into here.

Evans: That’s Dr Nick Ambler. He’s a Clinical Psychologist and a lead of the North Bristol Pain Management and Self-Management Programmes at Southmead Hospital in Bristol in the UK. And this is Lisa Parry.

Lisa Parry: I’m a patient that’s been through a self-management programme within the hospital here and at the end of that, we were asked if any of us were interested in volunteering to help present the programme.  I had found it so beneficial for myself, that I thought it would be maybe a good thing for me to do.

Evans: Nick, you’re one of the leads on the pain management programme, I’m not sure I’ve come across patients being actively involved as teachers.

Ambler: It’s something we started around 2008/2009, as part of a multi-centre project across the country regarding long term conditions. [The project] involved not just involvement of a patient tutor in providing information and personal experience, but the sharing of the delivery of the whole course, which was a big leap for us then. Quite a few of us were concerned about how well that would work out, but we quickly found that it works spectacularly well within the context of reorganizing our service to have a middle tier.

I think most people have a grasp of what a pain management programme is nowadays, which from our point of view is quite an intensive form of support for people to learn self-management strategies with chronic pain. We created a middle tier for people that are really just ready to have a go at it. They already understand the basics of it, they’re not ambivalent about wanting to try that stuff out. We designed a shorter course, where you basically hit the ground running with that.

Evans: Now, I guess that it’s not unusual to have a so called “Expert Patient” in just to talk to people, but actually to teach them… what are the issues there?

Ambler:  I think the concerns everybody had really from people volunteering to come forward were “What do you want me to do, is it right that I should be doing this? I need to know what’s going to happen, I need to know precisely what I need to say”.

From the health professionals’ perspective, concern at having gathered a hell of a lot of experience before, you’re in a position where you can deliver pain management program, [but] it kind of felt as if that experience was being not being acknowledged. You do need that as a health professional, but what they lack is a day-to-day understanding of what it’s like living with pain, they don’t have personal reference points.

With every element of course delivery, there’s the stuff that will resonate for Lisa because she’s had to face those challenges in ways that I haven’t, so I can’t constantly refer back to that. They’re not a model of how well somebody can adapt themselves despite having pain every day. Lisa brings all of that stuff into a course in a way that I can’t.

So the thing that we needed to tackle fairly early on, was setting up a training course which provided the basic rudiments and also to define the role, because there are clear distinctions in the way in which the patient tutors operate within their share of the course and the way in which the health professionals operate.

Basics that we all observe though, is when you’re doing one of these courses, we have an understanding which is our own, that we try not to dictate. So we’ve had this mantra of “Ask Don’t Tell” which is basically – explore issues with people, but don’t try and tell them how to live their lives. The learning experience of taking part in one of these courses means rubbing shoulders with others in the same situation, learning as much off them and learning by trial and error, prioritizing what you want to change.  All those things are going to be a unique thing for each individual taking part.

Evans: Lisa, tell me about your pain journey.

Parry: Basically, I was fit and active, working for Bristol University at their Veterinary School, a very physically demanding job and one day I bent over at work and I then couldn’t walk. At the time I was just bent over in pain, I’d had what I think they used to call a slipped disc, a bulging disc and was expecting a fairly quick recovery from that which didn’t actually happen and I just could not do the job I was employed to do basically. I had to give up working then and it’s been kind of finding my way back from a bit of a dark place, from that point onwards, living with pain. It’s pretty constant, but now having done the self-management program, I’m able to manage that to a level where I can continue to do the things that I want to do now.

Ambler: I think anybody living with the situation that Lisa’s just described, faces lots of choices. They may not recognize those choices straight away.

For example, what do you prioritize if you only have so much energy and focus left to you in a day because you’ve had a terrible night’s sleep and you can’t move around very well. You could be thinking about managing a bit of the housework perhaps, or go to see someone or reading or something like that. What are you going to do? And what are you doing, for example, to maintain your fitness, against the fact that the pain that’s going on is probably complicating things with muscle tension, so if you’re inactive, it’s harder to get to sleep.  So, when you make that choice, it will have consequences.

If you do some more housework, it’s going to have a beneficial effect in one area, but not in another. If you decide to, say, call a friend or go see someone, likewise.

Evans: In some ways, it is a little bit of self-control as well, because if I’m feeling well today, or if Lisa’s feeling well today, she could go out and run a marathon. It might not be the correct thing to do, so you have to control your thoughts and actions.

Ambler: Yes, the topic of pacing is one of the things that people reflect back on at the end of course saying “I really needed to do something about that…” which is odd, because at the beginning of the course we generally ask people “who understands the importance of pacing?” and everybody says they do.

They all say “Yes, it’s really important” and so the next question that follows from that is “who is pretty good about applying it?

Evans: Lisa, how easy is pacing?

Parry: Really, really difficult [laughs]. Not for me now, now I’ve kind of got the hang of it. But at the beginning, really difficult to think “I’m going to do a minimum amount of something” to enable me to then get through the rest of the day. So I’ll do a minimum amount and then I’ll put a rest break in, or I’ll take a short walk, or I’ll do something else and I’ll go back and do another small portion a bit later on.

You’re fighting that instinct to get the job done, which is how I was brought up – if you start a job you should finish it.  I think that’s perhaps how a lot of people are, you want to get things done. To break that cycle is really quite difficult at the beginning, but once you do, it’s fantastic and it has actually enabled me to do far more, long-term than if I had tried to keep going on this cycle of “do it all” and then be off my feet for four days.

Evans: Nick, I suppose you have to keep (for want of a better term) patient trainers on message, it has to be within your curriculum?

Ambler: Yes, and there is always a sense with these courses that we don’t have enough time to get through all that we want to get through. There’s a degree to which one adapts each course, according to what crops up for that group of people. Some have bigger priorities, for example, around the way in which frustration and anger can come out in everyday life in relationships. That wouldn’t normally be part of our curriculum for the course, but sometimes we bring stuff in about that and run a session on that.

Lots of groups have real issues with sleep, it’s something my colleague, Sareeta, knows a lot about. There’s other groups [where] that’s less the case and so we might magnify or play that down. But we do have core set of things that we need to get through.

I think as well, one of the disciplines for health professionals that we have to do, is for us not to be telling long, elaborate, metaphorical stories about why a point is important, when you have somebody sitting next to you who can talk from the heart about what they did in a much more succinct way. So, to an extent, the health professionals need to rein it in, not just the patient tutors!

Evans: Sareeta, Nick has just dropped you in it by talking about the sleep course.  The Sleep Management Programme, that’s not the same as the Pain Management Programme?

Sareeta Vyas: No, it’s a separate course that we run so people could come along to improve their sleep either before they attend a pain management programme or a self-management programme or after. It’s really a time just to focus purely on improving someone’s sleep. We’ve adapted the cognitive behavioural therapy approach for insomnia to cater for people in chronic pain.

So making their area for sleep as comfortable as possible, maybe putting in some routines of winding down before they go to sleep, putting in some consistent bedtimes and wake up times. We also look at thoughts that might be happening at night, because we know that a lot of people do their thinking at night and that can be quite distressing if their thoughts go to things that keep them awake.

But the most powerful part of the course is what we call sleep compression or sleep restriction. The idea of sleep compression or sleep restriction is actually reducing the amount of time that you are in bed so that the sleep pressure builds up throughout the day, so that once you do get into bed, you get off quicker. You may still wake up throughout the night, but the times that you are awake for are reduced and people report feeling their quality of sleep has improved as well.

It all sounds quite difficult because a lot of people really struggle with that.  Initially you’re actually reducing the time that you’re spending in bed by a quite significant amount, so that can be really, really challenging to stay awake longer in the evenings and when every part of you wants to get into bed.

It’s a really difficult kind of intervention to go through and that’s where the group comes together really well.  There might be several people in the group that are doing that together and so when they come back to report on how the week’s been, it’s something that can they can think about together and think of ways of how they can keep going with it.

Evans: At what stage do people come on the pain management course Nick?

Ambler: I would like to think people come when they feel that this is the right thing for them. So you meet people fairly early on after an injury, similar to the way that Lisa described. They could be expecting, reasonably, that they might recover [e.g.] I don’t need to be doing something like this, because I’m going to be better by this time next year.

Parry: My attitude going into doing my course was, even if I just learned one new thing that will help me to make an improvement; that would be enough. Obviously, I picked up lots more than that.

Evans: So you went from patient to patient tutor…how did that happen? How did you make that transition?

Parry: At the end of the course, we were asked as a group, if anyone would be interested in doing it. I actually had a Patient Tutor on my course, who I felt just made everything valid. It was real, it she’d had personal experience; she understood what we were saying. That was really important to me to have her, there so I just felt “Oh I’ll give it a go. I might not be able to do it, I may not even get as far as the meeting about it”.  But I did and I did the training course, I then actually went and sat in on a course. I didn’t actually present or give any sort of teaching as such, but I was observing and watching what they were doing and then after that I did my first course.

Evans: What was that like?

Parry:  Scary as can be [laughs]. Really scared, quite nervous, just with a group of people coming in that obviously you’ve never met before. Explaining to them that it was my first time and be nice to me, basically! But yeah, it was absolutely fine.

Evans: So did you feel the love, the empathy coming back at you?

Parry: Yeah, oh absolutely, they were really fantastic. Because I’d said “This is the first time I’ve done this”.  They were just like “It’s really good, you’re doing fine” and that gave me a massive amount of confidence to keep going and to enjoy what I was doing.

Evans: So we’ve heard all about this empathy, this love – it’s a two-way thing for the patient tutor and the patient. What happens when they part company and the pain management programme is over?

Ambler: I think usually there’s a hope on the part of the health professionals, that this is the beginning, the platform after which people will power on. They have a grasp of what’s involved, but they haven’t resolved everything, they haven’t got to the perfect place for coping yet and that they will use what they’ve learned off each other in this part of the programme to take things forward.

But sadly, when you meet people later on, that often turns out not to be the case and one of the things that we’ve been trying to do differently in the last five years has been to change the way courses end. This all came from an incident that happened in that first group that Lisa was describing and it was when we met for a follow-up meeting three months after that course had finished. Do you remember what happened Lisa?

Parry:  Yeah, one of the girls in the in the group basically took Nick to one side and said “Oh what do we do now, you can’t just leave us, we’re feeling like you’ve abandoned us” kind of that scenario and was sort of demanding “What do we do, what are we going to do?”.

Ambler:  At this point, it’s not just me, health professionals who run courses tend to squirm. They have, in a sense, got to close this off now. That’s part of our process, because we need to be moving on, we’ve already prepared the next course and we can’t be doing with bids for keeping the whole thing going.

But in that situation, my squirming and wriggling led to me pushing it back to that group of people to figure out what they were going to do to keep it going. But the thing that was different, was the question was about them collectively rather than individually and that group of people decided they will carry on meeting without me, but they invited Lisa to carry on with them, as someone who knew and that’s pretty much what happened isn’t it?

Parry: Yeah and we still meet now. That was about six years ago from that first course. They decided they were going to get together every two weeks to meet up for a couple of hours, just to see how everyone was doing, to make sure people were still managing and they weren’t struggling with anything, they asked me to go along.

We had our Christmas party last Friday for a couple of hours and yes, we’ve continued to meet.

Ambler:  [It’s] more than just the social contact though, they kept going with the business side…

Parry: Oh yeah, we still goal set. We took goal setting as our main focus because we’re constantly trying to move forwards. There are things we need to do and there are things we want to do.  I think we all felt, through that first course, that that was a really beneficial thing for us so we carried on doing it.

Ambler:  This became something that we learned from, because we figured out that this group of people were doing something that seemed clearly to be of great value to them. When I had reason to meet with them sometime after this, they’d resolved a whole load of problems which I would have expected to come back either into a General Practitioner’s clinic or into the pain clinic.

But they’d sorted that those problems out amongst themselves, crises really. So what we learned was to try and change the way we ended courses.  Rather than think of the whole process as packing up the tents, the circus is leaving town, which is really what’s going on in the health professional’s head, to see it instead as the health professionals leaving the party, but we’re going to keep it going, we’re not finished yet.

So, we changed the way in which we close off the course. We don’t think about the concept of closure in the same way as would normally happen in a group programme. Whilst the course is underway, we spend a bit more time really building an idea that they can act as therapists for each other, within the course.  [It’s] kind of co-counselling, which is the way we’ve worked out goal-setting, how to run goal-setting.

Rather than the health professional being in command of the whole process, what we do at the start of the course is try and get across the process by which you can be a counsellor to the person sitting next to you, to be a co-therapist and how you can look after each other. Also to really underline the importance of social contact as being one of the best protectors against relapse with chronic pain. Which is part of why that particular group were looking after each other so well, supporting each other when one of them was having a difficult spell

The kind of dialogues we have towards the end, we start to plant the idea, just past the halfway point, that they can carry on without us and then build towards an endpoint where a decision should have been reached by those in the room about whether or not they want to, and how they’re going to keep going in the absence of the health professional.

Evans: You’re fairly unique in what you’re doing here, with patient tutors. How do your colleagues, the rest of the world if you like, take that on-board?

Ambler: I think they’re intellectually interested and we’ve been able to present the findings that we’ve had. Considering that usually, you get less than 50% of people coming back for a routine follow-up at the end of a course (that’s not just something locally, you find that around the country); we got 70% of people involved in this networking between each other, willingly engaging with that process, which I still scratch my head in amazement about.

So there’s plenty pointing to this being quite a phenomenon that should really be taking off, but I think when you’re under pressure of service delivery, getting through the numbers, you stick to what you know. It’s difficult to take risks and perhaps that’s contributing to the kind of sense of a slow burn with this.

There are plenty of people that want to talk and are interested in it, but there hasn’t been the sense of, “there’s a gold mine here”.  It really is something that could make a massive difference to the way in which people sustain the gains, sustain the momentum of a pain management programme, that’s our feeling. There really is something to mine into here.

Evans: That’s Dr Nick Ambler, Clinical Psychologist and a lead of the North Bristol Pain Management and Self-Management Programmes in the UK and also Assistant Psychologist Sareeta Vyas, who runs the Sleep Management Programme there.

So, casting our minds back to the International Association of the Study of Pain’s 2018 Global Year for Excellence in Pain Education, here’s something for healthcare professionals and policy makers to think about. The person with pain is not just a patient, but potentially is a valuable resource to help others. In the words of our patient trainer, Lisa Parry.

Parry: It has absolutely changed the way I approach things. I’ve got so much more confidence in myself, in the abilities that I have. It’s still a learning process for me, I find every course that I do, somebody will come in with something new and I’ll learn from them. It just constantly helps me reaffirm my own self-management and just giving me the confidence to try new things and make the move forward in life that I really want.


Contributors:

  • Dr Paul Wilkinson, Director of pain management services in Newcastle and lead of IASP 2018 international task force
  • Dr Nicholas Ambler, Clinical Psychologist and lead of NHS North Bristol Pain Management Programme
  • Lisa Parry, patient and patient trainer at NHS North Bristol PMP
  • Sareeta Vyas, Assistant Psychologist and leader of sleep management programme at NHS North Bristol PMP.

More information:

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

In pain? Don’t understand what’s happening?

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

In the days leading up to Christmas, HealthUnlocked is hosting an advent calendar featuring a different health condition and its associated online community.

Each post will feature facts, symptoms, management techniques and much more; from common to rare health conditions.

Pain Concern has the privilege to be featured on Wednesday the 20th! The post will be informative, eye opening blog on chronic pain and CRPS, including videos and podcasts. To read the blog, please visit http://blog.healthunlocked.com/ on Wednesday 20th.

Merry Christmas and Happy Holidays!

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

In pain? Don’t understand what’s happening?

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

How chronic pain can affect both sexual and emotional intimacy, and remembering that communication is key

This programme is supported by an educational grant from the Tillyloss Trust.

Along with food, shelter and clothing, sexual expression is one of the basic human needs. It allows us to express love and fulfils our need for human connection, but for the 14.3% of people in the UK living with moderately or severely disabling chronic pain, sex can be met with trepidation and anxiety.[1] This is understandable, as it is estimated that 75% of those that live with chronic pain experience sexual dysfunction.[2]

There can also be a certain amount of embarrassment in discussing chronic pain and its effect on sexual activity with healthcare professionals, especially if they don’t have the skills to address these issues. This is why Pain Concern has updated its sex and chronic pain leaflet with authors Katrine Petersen, senior physiotherapist, and Dr Sarah Edwards, clinical psychologist, who specialise in abdominal pelvic pain at the Pain Management Centre, University College London Hospitals NHS Foundation Trust. You can find the leaflet on our website here.

In this edition of Airing Pain, Paul speaks to Dr Edwards and Petersen about the major difficulties patients experience when it comes to living with chronic pain and managing sexual intimacy and techniques that can be used to combat them (you can find these techniques in our leaflet).

Denise Knowles, family counsellor and psychosexual therapist working with relationship support charity Relate, speaks about her experiences of how relationships can be affected not only by physical pain, but by mental pain as well. She also stresses the importance of the distinction between ‘sex’ and ‘intimacy’.

Issues covered in this programme include: Anxiety, dating, gender, intimacy, men’s pain, misconceptions, myths about sex, pelvic pain, urogenital pain, relationships, safe sex and women’s pain.


Contributors:

  • Denise Knowle, Family Counsellor and Psychosexual Therapist with charity Relate
  • Dr Sara Edwards, Psychologist, Specialist in Abdominal Pelvic Pain at Pain Management Centre, UCL Hospitals NHS Foundation Trust
  • Katrine Petersen, Specialist Physiotherapist in Pain Management, Chronic Abdomino-Pelvic Pain at Pain Management Centre, UCL Hospitals NHS Foundation Trust
  • Meda Minard, Gynecologist from Denmark.

More information:


[1] The British Pain Society https://www.britishpainsociety.org/mediacentre/news/the-silent-epidemic-chronic-pain-in-the-uk/.

[2] Robert Rothrock https://painconcern.org.uk/sex-and-chronic-pain/.

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How chronic pain can affect both sexual and emotional intimacy, and remembering that communication is key

To listen to this programme, click here.

This programme is supported by an educational grant from the Tillyloss Trust.

Along with food, shelter and clothing, sexual expression is one of the basic human needs. It allows us to express love and fulfils our need for human connection, but for the 14.3% of people in the UK living with moderately or severely disabling chronic pain, sex can be met with trepidation and anxiety.[1] This is understandable, as it is estimated that 75% of those that live with chronic pain experience sexual dysfunction.[2]

There can also be a certain amount of embarrassment in discussing chronic pain and its effect on sexual activity with healthcare professionals, especially if they don’t have the skills to address these issues. This is why Pain Concern has updated its sex and chronic pain leaflet with authors Katrine Petersen, senior physiotherapist, and Dr Sarah Edwards, clinical psychologist, who specialise in abdominal pelvic pain at the Pain Management Centre, University College London Hospitals NHS Foundation Trust. You can find the leaflet on our website here.

In this edition of Airing Pain, Paul speaks to Dr Edwards and Petersen about the major difficulties patients experience when it comes to living with chronic pain and managing sexual intimacy and techniques that can be used to combat them (you can find these techniques in our leaflet).

Denise Knowles, family counsellor and psychosexual therapist working with relationship support charity Relate, speaks about her experiences of how relationships can be affected not only by physical pain, but by mental pain as well. She also stresses the importance of the distinction between ‘sex’ and ‘intimacy’.

Issues covered in this programme include: Anxiety, dating, gender, intimacy, men’s pain, misconceptions, myths about sex, pelvic pain, urogenital pain, relationships, safe sex and women’s pain.

Paul Evans: This is Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and for health care professionals. I’m Paul Evans, and this edition is supported by an educational grant from the Tillyloss Trust.

Denise Knowles: Over the years that I’ve been working in this area, I never cease to be amazed at what a taboo subject sex still is between couples. You know, we’re surrounded by sexuality and yet it’s still a very difficult subject for people to talk about.

Evans: Persistent or chronic pain can impact on lots of areas of life such as work, exercise, socialising and mood.  But its effect on sexual activity can be difficult to discuss, or even admit to by the person in pain and his or her partner. Difficulties and embarrassment can also be compounded when one’s health care professionals don’t have the skills and confidence in addressing sexual difficulties. With this in mind, Pain Concern has updated its ‘Sex and Chronic Pain’ leaflet. Its authors are Senior Physiotherapist Katrine Petersen and Clinical Psychologist Dr Sarah Edwards, both of whom specialise in abdominal pelvic pain at the Pain Management Centre, University College London Hospitals NHS Foundation Trust.

Dr Sarah Edwards: Most people who come to see us struggle to talk about [sex] either when we first see them for assessment or when we’re seeing them for regular therapy sessions, either individually or in a group. So [that’s] one of the reasons that we did the leaflet and we’re also writing up a model that we’ve written on working with sex with people with chronic pain.  We’re writing it up for publication, partly just to publicize the whole issue, because I think people get very embarrassed, they feel quite ashamed, they feel quite shy about talking about it.

Of course, if they don’t talk about it as an issue, it’s hard for us as clinicians to help them. On the other side of the coin, as clinicians, we’re often quite reticent to bring it up as an issue because we also feel embarrassed and don’t quite know what to say or how to ask. So it’s really trying to open up the conversation, I think that’s the starting point.

Evans: I have to admit that I’m embarrassed as well.  I’m a man well beyond my prime [laughter] but it is not a subject I would bring up anywhere outside my household or in front of you two.

Katrine Petersen: As a physiotherapist, I will ask people about various aspects of their lives, in terms of activity. So I’ll ask them about sport, walking, sitting, going out socialising etc. and along that list of questions I have comes intimacy.  So I ask about relationships and intimacy and a majority of people are quite willing and relieved that someone’s actually asking about the issues.

Evans:  So, what are the issues, you tell me?

Petersen: Often, with chronic pain patients, well number one, they can be on a number of medications that means that sexual activity becomes much more difficult. At times, they don’t even realize it’s a medication that might be causing them to have problems with sex drive. It’s not until you raise it and explain it to them, that they can actually do something about it, rather than worrying about it being another type of issue.

Then, of course, there’s all the physical restrictions that people have when they have pain and things they want to avoid. Ultimately, it’s just like any other activity, if something is painful, you want to avoid it.  But over time, what we know is that people then start missing out on something that’s a huge part of their life.

Evans: And I guess missing out on that, it puts huge burdens on a relationship?

Edwards: Hmm, I think it can put a relationship that might be under strain already, under even more strain. All of us hold kind of ideas or myths in our heads about how sex should be and that’s often come from the media, from newspapers and soap operas, and everything else. So all those ideas about sex which should be spontaneous and adventurous and three times a week or whatever it is that you’ve read in the paper, and if people aren’t living up to that ideal, they often feel that they can’t really mention it .If they don’t talk to their partner about it and sex just falls by the wayside, that can lead both partners to feel quite disconnected from each other.

What we see sometimes with people who aren’t in a current relationship, is that they may assume that because they’ve got pain and sex is more difficult than it used to be, they put any idea of being in a relationship in the future on hold, that it’s just not going to happen. That’s such a big part of life that it’s a real loss to shut oneself off from that possibility.  We’ll often help them to build up their confidence, so they can consider having a romantic relationship in the future, rather than thinking to themselves that that will never happen.

Evans: So how do you deal with that? Say somebody, well they don’t have to be young, they could be middle-aged, they could be old and not in a relationship and holding back from a relationship, because they feel that whoever they get involved with, the partner will not be fulfilled, it wouldn’t be a fulfilling relationship. How do you deal with that?

Petersen: I talk to patients about activity and it would be familiar to a lot of people who might have worked in pain, or who have been to see pain management clinicians – the idea of pacing and the idea of finding a baseline and then gradually building up. It would be familiar to lots of people, if they want to run a marathon, they’re not just going to do a marathon – they kind of build up for it gradually. They will probably hurt somewhere along the way but that’s a normal part of building up. So I talk to patients about how you build up to activity in the same way, when I talk about sexual activity.

If someone is not in a relationship, it’s about establishing a baseline, what are they prepared to explore? So we do have to talk about words like masturbation and vibrators and stuff that patients can do themselves to work out their baseline – because if they do come across someone whom they might want to be in a relationship with, it’s really important able to explain to them what can I tolerate, this is this is as far as I’m prepared to go at this point in time.

Of course, exploring those myths – just because you meet a partner who looks well, doesn’t mean they don’t have their own issues. It’s surprising how many people do gradually start to realize that actually, a huge part of the population will have some form of sexual issue at some point in their life and that we all have to have strategies to deal with that.

Edwards: There’s a very helpful approach called Sensate Focus, which is used in lots of different areas of sex therapy, which is basically a step by step building up of sexual activity, starting just with physical affection and then moving all the way up to penetrative sex, a lot further down the line. That works really well for people for all sorts of reasons, but again if you’re in a relationship when you have a partner, you need to communicate about that for it to be able to work. That can be embarrassing, so sometimes people will show their partner some written information, like the new leaflet that we’ve done or something else – that’s a kind of starting point to discussing something that maybe they haven’t openly discussed before.

Most people’s experience is that actually their partner may have had some worries themselves about why sex has decreased [such as] doesn’t that person find them attractive, don’t they like them anymore, is the relationship on the rocks? So usually they’re quite reassured by the discussion, even if it is a bit embarrassing.

Evans: But when we talk about discussions, that assumes that couples are still talking to each other and that it hasn’t gone beyond that point of anger, if you like, and frustration.

Edwards: Yeah, I think that’s a very good point and there are all sorts of things that come in the way of a relationship, so it could be pain, it could be difficulties with sexual function, it could be other things and so when we assess someone or when we assess someone and their partner, we will sometimes refer them on for psychosexual counselling or to an organization like Relate, because there may be bigger issues.  It may not just be about maintaining sexual intimacy in the context of pain.

Evans:  That was psychologist Dr Sarah Edwards and before her, physiotherapist Katrine Peterson of the Pain Management Centre, University College London Hospital.

Well, the charity, Relate referred to there, provide relationship support for people of all ages, backgrounds and sexual orientations, to individuals, couples and families, with any aspect of their relationship that’s not working for them. Denise Knowles is a counsellor, family counsellor and psychosexual therapist working with Relate.

Denise Knowles: Psychosexual therapy works with people who are experiencing sexual dysfunctions or sexual pain or any kind of problems in their sexual relationship. We work with them to work out what it is that’s actually causing them the pain, what’s causing the blocks to them enjoying themselves.

Evans: By pain, you’re talking about mental pain?

Knowles: Mental and sometimes physical, because sometimes in sexual relationships, if people have got other conditions, they’re living with other problems [and] that can cause them pain, so they might not be able to enjoy themselves sexually as they once did. That in itself can actually cause a sense of loss, a little bit of grief, a little bit of angst for the partner who perhaps is not living with any painful conditions. So they will come along just to have a chat about how that’s affecting them psychologically and emotionally, and to find a way forward, so that they can both get what they want.

Evans: Do people with chronic pain come to you for help with getting through their relationships?

Knowles: People will come with all sorts of trigger points and chronic pain can certainly be one of those trigger points. But I think it’s also important to say that some people will come along because they’re experiencing pain that may well have been brought about through the difficulties that they’ve already begun to experience in their relationship, so we have to work out what comes first really.

Stress can create all sorts of chronic pain in our bodies, as can anxiety, and so can depression, so we have to work out what it is.  Obviously, when someone is diagnosed with chronic pain, the impact on the couple-relationship and indeed the family-relationship can be immense and often needs to be talked through.

Evans:  What are the tensions?

Knowles: One of the tensions can be, someone is living with a chronic condition that’s causing them a great deal of pain, but won’t do anything about it.  They won’t help themselves to help their relationship. The ‘non-pain’ person will actually say “Am I not important enough?”, “For goodness sake, why can’t you do something about that?”, or “You’re not the person I married” and “Why aren’t we doing this and why aren’t we doing that?”.  So they can start to have quite a lot of frustration and perhaps some resentments, which can lead to arguments and once they start arguing then they can often start blaming and that blame can be very toxic in relationships.

Evans:  Now let me go back a little bit, how important is sex to a relationship?

Knowles: That’s a really good question [laughs]. For some, it’s not important at all, for others, it’s uber-important. Then you’ve got a whole raft of people in the middle – yes sometimes it’s important and sometimes it’s not.  But I think it’s one of those things in relationships that, whilst it’s happening, it doesn’t matter about the frequency, but it’s happening, it’s ok. When it stops happening or it becomes less frequent and satisfying for one or the other, then that’s when it becomes a problem.  That’s obviously when people might come along to Relate to explore what that is all about, so it can be important, very and not at all.

Evans:  Explain how you work with a couple.

Knowles: Each couple can be… well, they are unique, there’s no two ways about it. One of the things that is really good about therapy is that we haven’t got a one-size-fits-all kind of answer to their difficulties.  Nor do we have magic wands or crystal balls and I think that’s important to say too.

What we will do, particularly in sex therapy, is take an extended assessment. We’ll talk to them individually and that might actually uncover all sorts of really deep-seated beliefs about therapy and also about sex, [e.g.] their attitude towards sex, how they’ve learnt about it, where they’ve learnt about it, what indeed they’ve learned about it, can all influence how they are in their couple-relationship.

Once we’ve got all that sort of information, then we can actually look and say “Well, maybe we need to talk a little bit about this and bring you closer together in your attitudes, rather than actually having you poles apart”.  Then what we can do, if it’s appropriate, we can actually then start to give them some kind of behavioural programme to go away and do at home, in the comfort of their own home, and then come back and tell us how they’ve got on with that.

We’ll tweak that programme from there on in, but it’s very much client led. It’s not about the counsellor or the therapist saying “You must do this” and “You must do that” and “What? What’s the problem with that?” there’s no judgment and it’s all very confidential.

I think that’s what helps people to feel safe about actually approaching such organizations as Relate.

Evans:  What do you mean by a behavioural programme?

Knowles:  If you can imagine, particularly in sex therapy, there will be certain behaviours, this is why we do such an in-depth assessment.  If we come across something that may be a cultural or a religious aspect to their behaviours, we have to actually unpick that, particularly in cross cultural /cross religion type relationships, so we’ve got to be very sensitive to each of those things.

But if you can imagine a couple that might have drifted apart because they’re arguing, or maybe there’s pain and there’s this business of not managing it very well, they’ve stopped touching one another, they may have even stopped cuddling one another.

I’ve worked with people that even having a cuddle can be painful, so actually how do you help them to reconnect at a physical level?  One of the things that we will do is ask them to put some time aside, perhaps to spend with one another and it depends where their start point is, as to where we take them or where we help them, guide them to actually try different touch, different strokes, different sensations, take sex out of the picture for a wee while, because that can put an enormous pressure on people, but actually just to help them to reconnect, often by just making the time to spend together.

Evans:  This brings me a little bit to some of the myths that surround sex, you know, it has to be twice a week, it has to be spontaneous…

Knowles:  Oh gosh, that word, spontaneous [laughs].  One of the things that I will often say is, “Spontaneity needs to be planned” and that takes me back to this idea of having time together, because if you haven’t got the time together, then you can’t have sex and if you’re always in a rush, you know, we can’t even have ten minutes of lying down together, because I’ve got to get up and do this and I’ve got that to do and all the rest of it. Of course, that might be a bit of an avoidance and we’d have to understand what that’s about, but actually, we have to have the time.

Once you’ve got the time put to one side, what you do with it can be quite spontaneous, but you can’t start being spontaneous if you haven’t got the time.  With the busy lives that we’re leading nowadays, we have to programme or diary in that time.

Once that’s happened, once couples have got time together, it’s important that they learn different ways to be with each other. Now, the way our brains are constructed, it’s a wonderful piece of plastic in here and the plasticity of our brain means that we can learn different things and we’re never too old to learn. So if we get people to repeat things, if we get our clients to actually repeat certain things, then, actually new neural pathways can be laid down, but there has to be a willingness and a determination commitment to doing that. So we will get them to practice different touches, different sensations, even relaxing… people are not taking the time to relax nowadays and so asking somebody to linger a little bit longer in the bath or the shower, they’ll be going “I’ve got this to do or that to do…”.  It’s really essential that they learn about their own bodies and how to relax and that way they can then start to share those experiences with their partners.

Evans:  That’s Denise Knowles, psychosexual therapist with the charity Relate.  Physiotherapist Katrine Peterson again.

Petersen: One of the key things that we need patients to get their head around is how safe is it for me to have sexual activity? There’s no point in building up towards something that patients don’t feel safe,  so we talk a lot about [the] chronic pain mechanism, why something can be painful even though it’s not causing harm. That, of course, can have a massive impact on the partner, they can be terrified of hurting their nearest and dearest. So sometimes, we invite the partner in just to hear that talk, and get their head around actually, yes, it can be painful, but it doesn’t mean I’m causing any harm and there are strategies to cope with that afterwards.

Evans: In your group sessions, do men and women think differently?

Petersen:  By and large, no, which is to some extent a surprise because we’re bombarded with myths about how men and women think differently. But when you’re sat with groups, it’s exactly the same issues that come up and the same strategies that people need. There’s just an anatomical difference, of course…

Edwards: …and the same worries about what will happen if they can’t have sex regularly, those are very similar for men or women aren’t they?

Evans: Now, the other thing I’d like to talk about is age groups. Do different age groups react differently?

Edwards: I don’t think so.  What do you think?

 Petersen: You can tell that’s a bit of a hard question, we’re having to think about it…

Edwards: I mean the only difference there tends to be is that our younger patients tend not to be in long-term relationships as much, so they’re more likely to be worried about “Well if I meet someone new, what am I going to say to them? How am I going to deal with it?”  Our older patients are more likely to be an established relationship, but they may be single as well. I don’t think there’s much difference.

Petersen: I don’t think there’s much difference. I’m thinking that maybe if a 20 year old says to me “In my relationship, sex is not important, because I’ve got pain and that’s not an issue”, I would potentially, and this makes me sound a bit prejudiced, but I may push it a little bit more.

Then if someone, in the context of their partner being there, or their husband being there, and they’ve come to a part in their life where they’ve decided that actually, penetrative intercourse isn’t important anymore, not because of my pain, but that’s just what we decided. I might be less inclined to push it, because that’s the decision that some people make for all sorts of health issues.

Edwards: We see patients who’ve been married for thirty years and it’s still something that they want to get back to, if it’s been on the backburner for the last few years because of pain, just as much as a twenty-something might want to get back to that area of their life as well, so I don’t think there’s much difference.

Evans: Well, sitting in on our conversation is Meda Minard.

Minard: Yes I’m a gynaecologist from Denmark visiting this clinic.

Evans: You were just commenting that you think there is an age group difference between the attitudes of young people and old people…

Minard:  I had a group session, just once, with older women and younger women having pain during sex. The older women are more open and already in this half hour conversation in groups of six, they share their knowledge quite openly and often the young women below 25, I think, are much more shy, that’s very new to me.

Evans:  It’s very interesting because we sort of assume, in our permissive society, that sex is common currency in schools and in universities and whatever. You seem to think that it’s, or from your experience, if it is more common, they’re keeping quiet about it?

Minard:  Yes and I don’t think they learn so much about sex just being a normal, natural thing. They learn about chlamydia and HIV and condoms and not how it’s a challenge to have sex, it’s not so easy. The older women know that, that it’s not so easy, so they’re more relaxed, maybe.

Edwards: Yeah, I think that, in a way, for the younger generation, there are even more myths about how sex should be and how people should be beautiful and always look good and always have an amazing time. I think maybe when you’re younger, you maybe buy into those myths a bit more, as you’re saying. As you get older, then reality bites a bit more.

Evans:  Working with young people and possibly more mature people in the same group, does the influence of the mature person rub off onto the younger person, do they open up?

Minard:  I think that if there’s one person opening up in the group and giving her advice to the others, if she has something to share, it’s even better than if I, as a health professional, give them any advice. It’s much better if one of the other women tell the youngest, this is my experience, try this…

Edwards:  Definitely, yes. One of the best ways of debunking those myths is for people to have an open discussion between themselves because then, they can really see that sex is not always spontaneous, that people do plan it, that it’s not always amazing, that sometimes people don’t enjoy themselves as much as they’d like to. As Meda said, in a way that’s much easier to hear than if it’s a professional talking at you, so those group discussions can be really helpful.

Evans:  That’s Dr. Sarah Edwards of the Pain Management Centre University College London Hospitals.

Psychosexual therapist, Denise Knowles, of Relate again.

Knowles: One of the things that it’s important to make clear here, is that there is a difference between sex and intimacy. But when we start talking about sex, many people are just talking about penetrative intercourse. When we start talking about intimacy, we’re talking about all the luxurious touching and stroking and cuddling and togetherness and the kissing and all of those wonderful things that can take part.  Sadly, if people withdraw from that because they’re fearful they’re not going to be able to follow through with the sexual intercourse, then the whole relationship becomes a little bit like a desert and it’s devoid of any of that wonderful closeness and intimacy and that in itself creates problems. So the need is more for intimacy, perhaps, than it is for sex, as we get older and as our conditions change.

Evans: There’s nothing actually quite like a cuddle…

Knowles:  Oh it’s wonderful, it’s almost a cure for anything and everything. But of course, there are people that are touch averse and again if someone is experiencing a lot of pain, even someone touching gently their skin could set off all sorts of pain messages to the brain. It’s very difficult then to cuddle.  I might be the one that needs the cuddle and I might come up and want to give you cuddle and actually you can’t tolerate that, so you will flinch and I’ll go “Ohhhhh…” and so the distance immediately starts to grow through a lack of communication and understanding.

Petersen: Because of all the myths partly, people think “I can’t really be intimate with my partner unless we go all the way and have penetrative intercourse” so therefore I may completely withdraw.

A lot of patients tell us that they completely withdraw, they don’t like their partner touching them, and they’re worried about kissing in case it leads something that might be painful.  So even restoring the ability to have someone to hug you or kiss you could be the first step, just to draw out the intimacy that probably was there at one point, without having to focus on the ultimate act of having sex.

Desensitization is based on the ability of the nervous system to adapt, it’s a neural plasticity that you may suffer with sensitivity to touch but it doesn’t have to stay like that. If that’s also driven by a large amount of anxiety and stress about what this might lead to, then it can be really helpful to have this communication tool whereby you say “we’re just going to do things in a step-by-step manner”. The first step may just be to work on tolerating touch.

Evans: In your leaflet, you give the image of walking on pebbles with no shoes on for the first-time.  The first time, it’ll be very painful and then you get used to it. When was reading that, I was thinking of my electric toothbrush and the first time you start using it, it’s unbearably ticklish, but all of a sudden, it’s gone.  That’s what you’re talking about, the plasticity of the brain?

Petersen: Absolutely, just that initial new stimuli that you might not be used to and you would expect your nervous system to kind of kick up a bit of a fuss, going “Whoa, whoa, whoa… what’s going on here? Why are you kind of shaking your teeth? Why are you walking on some pebbles that seem unusual, because you’re not wearing shoes?”.  So you would expect your nervous system kick up a fuss and if you already have a chronic pain condition, that could be quite unpleasant. But having confidence, which is something that we obviously support patients with, but hopefully also our leaflet will bring the image to mind that actually, in their quest to get to the water because it’s so enjoyable to swim, they will get through that.  The more they do it, the more the body will get used to it and eventually the whole nervous system will accept this isn’t actually harmful.

Evans: The ink is still wet on Pain Concern’s updated leaflet on ‘Sex and Chronic Pain’ by Katrine Peterson and Sarah Edwards. You can read it or download it from Pain Concern’s website at www.painconcern.org.uk.  Just go to the ‘Get Informed’ dropdown tab and you’ll find it with our other leaflets. The leaflet recommends the charity, Relate for all kinds of resources and support on relationship issues, including sexual relationship difficulties. And Relate’s website is https://www.relate.org.uk

Of course, I have to remind you that whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf. And don’t forget that you can download all editions and transcripts of Airing Pain from Pain Concern’s website. Once again it’s www.painconcern.org.uk.

I’ll end this edition of Airing Pain with advice from Relate’s psychosexual therapist Denise Knowles for couples, one of whom has chronic pain, but both partners are aware that something in their relationship is missing.

Knowles: If I have a couple where they’re both aware that something’s missing, actually we’re halfway to getting some kind of result and solution. The problem comes when one person recognizes something’s missing and the other person doesn’t.

But someone living with chronic pain actually has got an awful lot going on for them. They’re having to manage a whole range of different emotions and if they’re not able to share those, they’re so kind of distant, they’re not going to notice something’s missing because they’re so wrapped up in their own world. That can be a bit difficult because the person that feels something is missing wants to say it and bring it to the attention of the relationship without pointing any fingers of blame, without actually saying “If only you would this or you would that…” and without actually hurting the other person.

Couples usually set up what I’ve come to refer to as a mutual protection racket – I won’t say anything to him or her because I know it’ll upset them, so it remains unsaid.  In the counselling room all of that has nowhere to go, it’s got to be talked to otherwise, why are you here talking to me as a therapist?

We can gently, gently understand the fears that often the person with the chronic pain is living with, with the disbelief that this is happening to them and putting together their new place, their new status if you like and integrating that into the relationship.  Often the person living without the pain has no idea about the fears and the angers and the upsets and the lack of trust, the doubt that the person living with pain is now managing within them, because no-one’s said anything, so that’s what we will do –  bring it out into the open, gently, sensitively and without any judgment.


Contributors:

  • Denise Knowles, Counsellor, Family Counsellor and Psychosexual Therapist with charity Relate
  • Dr Sarah Edwards, Psychologist, Specialist in Abdominal Pelvic Pain at Pain Management Centre, UCL Hospitals NHS Foundation Trust
  • Katrine Pietersen, Specialist Physiotherapist in Pain Management, Chronic Abdomino-Pelvic Pain at Pain Management Centre, UCL Hospitals NHS Foundation Trust
  • Meda Minard, Gynecologist from Denmark

More information:


[1] The British Pain Society https://www.britishpainsociety.org/mediacentre/news/the-silent-epidemic-chronic-pain-in-the-uk/

[2] Robert Rothrock https://painconcern.org.uk.org.uk/sex-and-chronic-pain/

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In pain? Don’t understand what’s happening?

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

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In honour of the British Pain Society reaching a 50-year milestone, current BPS president Dr Andrew Baranowski, founding member Professor Sir Michael Bond, and Pain Concern’s chair Heather Wallace were invited to discuss a wide variety of topics relating to the understanding of pain

This programme was funded by an educational grant from Napp Pharmaceuticals Ltd.

In 2017, the British Pain Society celebrated its fiftieth year as one of the foremost organisations for furthering the understanding of pain, and is now the oldest and largest multidisciplinary pain-focused organisation in the UK.

Founded as The Pain Group in 1967, its membership was limited purely to anaesthetists working in pain clinics.  In 1979, the organisation registered as a charity, changing its name to the Intractable Pain Society of Great Britain and Ireland.

Over the years, the organisation became increasingly multidisciplinary and, in 1988, changed its name to The Pain Society to reflect this shift. The society’s membership and activities continued to grow, and in 2004 the Pain Society transferred all its assets to an organisation with charitable status and became The British Pain Society.

As the largest professional organisation in the field of pain, the BPS continues to strive to provide an evidence-based, multidisciplinary approach to raising awareness for those living with pain, and to elevate pain education and management.

To celebrate this storied fifty years, Pain Concern invited Dr Andrew Baranowski, current president of the BPS, Professor Sir Michael Bond, one of the world’s leading authorities on the psychological effects of pain and one of the people involved in the society’s origins, to speak with Pain Concern’s chair Heather Wallace. This discussion explores the past, present and future of The British Pain Society.

Issues covered in this programme include: Abdominal pain, bladder pain, cancer, chemotherapy, chronic primary pain, depression, epilepsy, funding and availability of pain services, policy, hypochondriasis, pelvic pain, psychology, rehabilitation, research, seizures and trauma.


Contributors:

  • Dr Andrew Baranowski, British Pain Society President
  • Professor Sir Michael Bond, founding member and former president of the BPS
  • Heather Wallace, Pain Concern Chair and BPS honorary member.

More information:

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

In pain? Don’t understand what’s happening?

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

In honour of the British Pain Society reaching a 50-year milestone, current BPS president Dr Andrew Baranowski, founding member Professor Sir Michael Bond, and Pain Concern’s chair Heather Wallace were invited to discuss a wide variety of topics relating to the understanding of pain

To listen to this programme, please click here.

This programme was funded by an educational grant from Napp Pharmaceuticals Ltd.

In 2017, the British Pain Society celebrated its fiftieth year as one of the foremost organisations for furthering the understanding of pain, and is now the oldest and largest multidisciplinary pain-focused organisation in the UK.

Founded as The Pain Group in 1967, its membership was limited purely to anaesthetists working in pain clinics.  In 1979, the organisation registered as a charity, changing its name to the Intractable Pain Society of Great Britain and Ireland.

Over the years, the organisation became increasingly multidisciplinary and, in 1988, changed its name to The Pain Society to reflect this shift. The society’s membership and activities continued to grow, and in 2004 the Pain Society transferred all its assets to an organisation with charitable status and became The British Pain Society.

As the largest professional organisation in the field of pain, the BPS continues to strive to provide an evidence-based, multidisciplinary approach to raising awareness for those living with pain, and to elevate pain education and management.

To celebrate this storied fifty years, Pain Concern invited Dr Andrew Baranowski, current president of the BPS, Professor Sir Michael Bond, one of the world’s leading authorities on the psychological effects of pain and one of the people involved in the society’s origins, to speak with Pain Concern’s chair Heather Wallace. This discussion explores the past, present and future of The British Pain Society.

Issues covered in this programme include: Abdominal pain, bladder pain, cancer, chemotherapy, chronic primary pain, depression, epilepsy, funding and availability of pain services, policy, hypochondriasis, pelvic pain, psychology, rehabilitation, research, seizures and trauma.

Andrew Baranowski: Dear friends and colleagues it is my great pleasure to welcome our members, guests and of course the fantastic faculty. Both international and home grown as well as both our loyal and new exhibitors to this years British Pain Society Annual Scientific Meeting.

This meeting is truly significant as it is the 50th such meeting. The intractable Pain Society of Great Britain and Ireland was formed in 1967 making our society probably the oldest pain society in the world and this our 50th anniversary. Their first meeting was in Manchester with 17 attendees.

Since that meeting we have grown in strength and we have nearly 600 attendees at this years meeting. This year in recognition of the achievements of the British Pain Society we’ll be launching the national awareness campaign. All of you can and please must help by raising the awareness of those living with pain.

We can also raise awareness of what you do to support the individual living with pain, their carers and the family and what the British Pain Society does to support you to provide the best evidence based multidisciplinary team approach. Thank you all for your support in attending.

this, the 50th ASM of the British Pain Society (applause)

Michael Bond: I started pain research or an interest in pain in 1963 when I was given the task of doing an MD on chemotherapy in women with carcinoma of the cervix and during the course of my work I observed that even though they had the same condition, the same level of development and were getting basically the same treatment the pain they experienced seemed to differ quite a lot and I wondered why.

What could be the reason? Now it happened that about the same time I changed over from surgery for reasons which I don’t need to go into. I became a trainee in the university department of psychiatry in Sheffield and wanted to carry this interest in pain with me and as it happened, there were two people in the department one man called [Harold Merscey], who is world famous in pain research literature and the other is a man called [Isi Polovski], who is also in his time very famous and so I had these two men who were eminently able to help and I said “what we need to do is think of a way of measuring pain in the women that I’ve been studying.”

And [Polovski] and I set about it and in 1966 we published the first account of the measurement of pain using something called an analogue scale which is really a zero to ten scale and that’s how I got started. In 1967 and I don’t know how it happened, I found myself with a group of anaesthetists, consultant anaesthetists, I think it was in [Solford]. They gathered to talk about the treatment of pain. They were all interested and practicing pain management by various forms of injection, put it that way and over the next two years they have further discussions about establishing a society and in 1969, they decided to found the British Intractable Pain Society.

So, I was there at the initial discussions and I was the only person there who was not a consultant and not an anaesthetist and I happened to have in my pocket the slides I had used in a talk elsewhere the previous day about pain and personality and women with carcinoma of the cervix and they said “would you like to give us the talk.” So, I did, that’s how I got involved with what became to begin with the Intractable Pain Society.

In the treatment of pain at that time was quite different from the way we approached the problems now, for example it was the pain that was treated not the person so as a consequence, people like those women I was talking about earlier, would all be given the same drugs for their pain however much they had or didn’t have and one of things I did was to measure pain using the analogue scale in a ward of women who had painful conditions of various kinds and a ward full of men.

I divided the drugs they had into three groups, powerful, medium and mild. Well the first thing I noticed was that the men were never given the powerful drugs irrespective of what their scores were and I asked why and the reason I was given was that men are expected to bare pain well. Now that was a cultural characteristic that was quite strong at that time. The second thing was that having recorded their pain levels amongst the women who did all receive analgesics.

There was no relationship between what they were given and what they recorded, so the tablets could have been in a bucket in the middle of the room and each one could of taken anyone they fancied, I would have been much the same I suppose but it showed that pain medication was given according to a ritual that had been established over the years, for this condition you give this and for that one you give that and all that almost immediately changed until we realised that this was completely unacceptable way of dealing with pain problems and at that time relating, getting the person to tell you about their pain and measuring their pain, looking at the medication that might be needed for that pain became very much more common practice, where I was at the time.

So that’s where it was when I started. The individuals who came together felt that there was a degree of isolation and what they wanted to do was to come together to talk about ways of improving pain management and that’s how it started. I mean the first ten years almost, it was consultants in anaesthetics only and the senior registrars were brought in but it didn’t become multi-professional until about 1987 after the foundation of the international association, which was founded as a multi-professional organisation.

So, the psychological and social aspects of pain in the early years wasn’t their major consideration although they acknowledged that these issues were something they should be considered but they came together to share knowledge for the early pain meetings it was primarily the presentation of anecdotal material. This is how I do it. I’ve done ten cases of this and these are what my results are.

There was no question of people doing trials of any description but they were transferring information from… you know one to another and presumable improving their technique and so forth until ultimately it was decided it had to be put onto standardised footing and membership, proper structure and Mark [Inaudible] was really the driving force behind that and he became the first chairman I think it was of the society

Andrew Baranowski: Most of the members if not all of the members apart from yourself were anaesthetists

Michael Bond: They were, yes.

Andrew Baranowski: and they were interested in the injection treatment management

Michael Bond: Correct, yes.

Andrew Baranowski: And of course, the injections have changed over the years because they were, some of the injections were what we might call destructive (unintelligible) treatments which we rarely use as specific indications in cancer patients and specific indications for spinal pain where we use those sorts of things.

Michael Bond: The only other group of people who were doing that kind of work were neurosurgeons and they did operations for facial pain Trigeminal Neuralgia and they did operations on the spinal cord for cancer pain.

Andrew Baranowski: So, what did they think of you?

Michael Bond: I don’t know really. I was at least in neurosurgery at that point but they seemed to accept me without any hard feelings or I think they were quite interested because I brought to the proceedings a slightly different slant. See at that time it wasn’t until 1964 that psychologists actually had a clinical position in the health service.

There were psychologists working in health service but they were doing things like intelligence testing in mental hospitals and they did the thing called the Rorschach test or ink blot test where interpretations were made of what patients said about what they saw in the ink blot.

I mean it was not clinical psychology as we know it but then a Professor [Trouthouen] who was a professor here at Birmingham was given a task of carrying out an investigation into whether or not psychologists should become clinically trained and should work clinically and the answer was, yes they should and that’s when clinical psychology in Britain appeared on the scene or began to appear as a profession and in my department in Sheffield we had a course.

Usually eighteen entrants a year of people who had a psychology degree, but then came in and did a training in clinical psychology and that’s how it all started with respect to psychology.

Andrew Baranowski: But at what point did you realise that there was more to pain that the brain was involved as much as anything else?

Michael Bond: Well if you think back to what I said about when I entered the department of psychiatry for training and I encountered those two people. [Harold Murscu] was working on depression and pain and had shown that 45% of people with severe depression have pain. It’s part of the depressive illness and it goes when you treat the depression.

There are other people who become depressed because they have pain but these are people who develop pain because they are depressed. So, there was clearly a relationship between mind and pain obvious at that stage. The other guy [Izzy Povolski] he was interested in Hypochondriasis, what was called illness behaviour. In other words, how did pain show itself in terms of alterations in behaviour and was it possible to approach the management of pain through analysing the behaviour and helping to change that and their experiences.

So, I learnt about these connections right at the beginning. Pain sometimes occurs in the most extraordinary circumstances and pain that is driven by psychological factors. This relates to a girl of about 20-22 and she was admitted to the hospital where I was surgically training and the surgeon who admitted her said he didn’t think that her abdominal pain which she’d had for six months had any obvious physical cause but he wanted to check so would I go and see her given my interest in these things.

So, I went to see her at bedtime which is a good time to see people and they’re more relaxed then. You know I said to her, this pain you know in your stomach and how long has it been there? She said, “six months.” And I said, “did it start suddenly?” She said, “Yes.” I said, “Well did anything happen about that time that was significant in your life?” and she said, “Well on the day before it started I went with my boyfriend to a dance. We were going to get engaged and when we were on the dance floor somebody came up to him and said I wouldn’t get engaged to her unless you know about this.”

Where upon she got hold of her lovely red hair and locks and pulled them off and underneath she was bald. So, somebody on the dance floor had pulled her wig off and exposed her to everybody as a bald young woman and she fainted and was taken home and the next day she had abdominal pain and every time she tried to go out of the house the pain became much worse. So, in other words it was protecting her against further exposure and embarrassment. So, we made the connections, also she had virtually no fingernail and toenails. She had some abnormality of the production of keratin which makes hair and so had her mother.

Now I pointed out, her mother had managed to marry and was successful and so forth and this is something that she will be able to get over and she did, the pain disappeared and the pain appeared where a year before she’d had an appendicectomy and something else I’ve learnt about that kind of event. The pain quite often appears in a site where there has been previous surgery. Suggesting that there if you like there’s a memory trace that still exists and can be lit up by psychological factors.

Andrew Baranowski: You can see that when you do an epidural on someone for labour or whatever and you actually trigger off a pain from previous surgery because again you’re manipulating the nervous system but in a completely different way. Which is a physical way rather than a psychological. So, the nervous system is quite complex from that point of view.

Michael Bond: Well it’s certainly, the traces of what has happened are still there quite a long time afterwards. What happens in the case of the women who you were dealing with, is their pain disappear again.

Andrew Baranowski: Or it can become persistent. [inaudible] you can open up the pathways [inaudible] I guess once you’ve opened it up then the risk is that it reinforces itself.

Michael Bond: Well I was a resident in Neurosurgery and I was on duty one night at the hospital and telephone rang and a woman crying on the other end and said I want to kill myself and I said “hang on you know, what’s wrong?” She said “I want to kill myself, I’ve got this terrible pain.” I said, “Where is it?” She said, “It’s in my back and legs.” I said “Hasn’t anybody dealt with it.” She said, “Oh yes I’m attending Mr so and so.” And she named one of the surgeons and he said he’s going to do major surgery on me to deal with it, but I can’t wait any longer.

So, I arranged for her to be admitted and she came in and they went to bed when she came in having examined her and she didn’t just have pain she was paraplegic. She arrived in a wheelchair and she’d been like that for I think it was three or four years, anyway plus pain. So about six o’clock in the morning I got a telephone call, would I come over to the ward.

The lady was having epileptic seizures and indeed she was, she was in status epilepticus and we dealt with that but it was about 36 hours before she was fully (inaudible). And I went to see her in the ward and said, “How are you feeling Mrs X.” She said, “Oh I feel rather groggy doctor, what’s been happening to me?” I said, “Well you’ve not been very well, but I’m pleased to say you know made a good recovery, how are your legs?” She had this big bed cage over her “legs. She said, “Oh there alright aren’t they.” So, I got the ward sister to lift off the covers and I said, “Let me see.” And she moved her legs up and down the bed and I said, “That’s very good.” The sister looked astonished and she said, “Well why are you interested in my legs.” And I said, “Well when you came in you couldn’t move them at all.”  She said, “Oh that wasn’t me.” I said, “You came in in a wheelchair.” And she said “No well, I can’t remember that at all.”

So, I went off and I found the surgeon who was going to operate on her and I said, “I want you to come and see something.” I said, “would you like to show Mr X your legs? She said, “You’re very interested in my legs.” I said, “we are.” So, then the same thing happened, he just turned pale and walked away realising what could of happened and hadn’t. So, I said, “Well that’s fine Mrs X, we’ll get the physios in and you’ll get walking and be fine and then said to her “Well when all this started were there any really serious problems in your life?” She said, “Well there was a big one, there was a steaming row.” She became paraplegic, you know it was a psychologically induced paralysis with pain.

Andrew Baranowski: But it’s a real paralysis isn’t it, because, I mean I can tell similar stories. I can think of a patient in particular who kept going to casualty with paralysis and then it would get better and so she came to see me and she was fine and went to leave the hospital and then I got a phone call saying this lady can’t move her legs and so on.

When I did all the reflexes, this that and the other, you know she was paralysed and he said, “ok. Better get her admitted.” But over time it became apparent that in this ladies case, that severity of the pain was such that to a certain extent she was dissociating from her limbs and turning off the connection and I think we can all feel like that sometimes, can’t we feel like we can’t get out of bed or whatever and it really is just to another level, so it’s a real physical problem but generated from a psychological (inaudible). And I guess we also have to really appreciate that these things are really physical as you alluded earlier, about the depression.

You know depression can cause pain but obviously those living in pain can feel as if they’re being tortured on a regular basis and therefore they’re going to become depressed and there is a strong link between thinking about your pain, so this emotional thing which we call ruminating and dwelling on things and depression. The more you are aware of your circumstances the more likely you are to be depressed and one of the big risks which I’d be interested in having your opinion on Michael is actually if you treat the depression you can actually make the patients worse because you can actually remove something that is a protective factor for them and you can remove something which is actually protecting them from self-harm because they realise actually my pain is bad but the depression has been (inaudible).

Michael Bond: Well I ran an inpatient pain rehabilitation service for about 10 years at (inaudible) hospital. Basically, we had three groups of people. We had people who were not coping with pain that they had left with as a consequence of trauma of one sort or another and they came from various departments and they were on massive doses of analgesics often dihydrocodeine.

The second group were those who came in with a depressive illness and pain but no cause for pain other than the fact it was part of their depression and the third group of people were those who had pain which was clearly being, it was an integral part of the way they managed their lives. We did well with the people who came in as a consequence of their trauma whatever that was and if they were habituated to dihydrocodeine, we had a five-week withdrawal program.

So, we would give them their regular dose of dihydrocodeine in cherry flavoured syrup and we told them that over five weeks the amount would be reduced. In fact, the last week there wouldn’t be any dihydrocodeine at all, they didn’t know that. The most difficult part of the whole operation was getting them off the cherry flavoured syrup at the end. Which there was nothing. But we did a lot of treatments of that kind and the depressed group we treated as depressed patients and of course obviously that went into the background of why the depression was there and why this defence mechanism as you might call it was operating.

So, it required possibly psychotherapy of one kind or another as well as antidepressant therapy to unlock and resolve the problems. The third group, those who used pain as a way of managing their lives were almost impossible to deal with. We never got very far or if we did it was a revolving door and do quite well. They go out two months later, three months later, they’ll be back again with the same problem.

Andrew Baranowski: We’ve been talking a lot about patients as subjects. The third party who is examined and treated and whatever, but when did patients become important to the management of pain?

Michael Bond: As people you mean?

Andrew Baranowski: A person as opposed to a patient.

Michael Bond: Good question. I suppose it began to appear when we decided how to define pain, again going back to I think round about 1976. ISP set up a working group and I was part of the group. Work steadily on what the fundamentals were for the experience of pain and the definition came out of that as an experience which has physical, psychological and social components. I can’t remember the exact wording but that’s basically what it is, that was the essence really, that definition of the change over to seeing pain as a multi-dimensional experience and there could be any or all of these operating at the same time or differently.

Andrew Baranowski: And that was key to how we now assess patients. When you look at managing your patient as a whole [inaudible] and the individual as a whole, you’re looking at the effect on the social side, relationships, the family, their physical ability to do things whether that be work or even simple things like going out for walks and so on as well as the emotional effect on their thought processes. What they think about the pain and the emotional responses [inaudible]. And that’s where pain management programs come into this and their usually [inaudible] and patients assessed by doctors to make sure things aren’t being missed to give the explanation [inaudible] and there run by psychologists, physiotherapists, nurses.

Michael Bond: There’s also, something else to rose out of that, a definition and that was another way of measuring pain called the [Magill] Pain Questionnaire and what [Ron Melsak] and his group in Montreal did was to analyse the words that people used to describe pain and categorize them into emotional, cognitive, can’t remember what they all are, but, and then the strength of the words is identified. You might say one to ten and by building up a picture, a word picture of the pain you can define the nature of the pain and at the end there is an analogue scale, an overall one to ten measurement, but it’s primarily used for research, it’s not something you use in the [Inaudible].

Andrew Baranowski: So, one of the things that I believe is going to be announced soon is that [Nice] is going to take on board looking at guidelines for pain medicine and the British Pain Society involved in that and that would be from primary community care through to specialised services. [Inaudible] what you say and one of the working groups that we’ve set up recently is looking at some sort of assessment, some sort of patient outcome measure that can be used, which will be used certainly in secondary and tertiary care and that’s a joint project with BPS. The faculty of Pain Medicine and [Nice] have actually [inaudible] someone to work with us on that project. That would be some sort of holistic measure, simpler than [Inaudible].

Paul Evans: Well let’s turn to the third member of our little [Inaudible] Heather Wallace, you are a patient. When did you turn from being a patient to a person, how did you get involved with this?

Heather Wallace: I was… developed pain when I was very young. I couldn’t even describe this pain. I just felt very strange but I was gradually being told that there was nothing wrong with me and that it was all in my mind and the problem was nobody helped me. You know, I used to go home thinking, if it’s all in my mind and I did kind of believe that because I’d been brought up to believe what your doctor said.

I used to lie in bed thinking, why am I doing this to myself? I’m destroying my life, why am I doing this to myself? And nobody helped me with the answer to that. Anyway, it did get quite bad and I was felt bullied. I can remember at some point particularly once I actually got under… in fact it was the psychologist who had trained in Canada on the Pain Management Program. I’d gone to him for a hypnosis for my pain, he actually said to me, “I think you’ve got nerve pain.” So that got it sorted and then there was this sense, nobody does that to me, how dare people treat me like that. I’m afraid it was a bit, you know, I’m going to get my own back here, but, there was no point in carrying on a situation of conflict because we couldn’t really solve the problem of pain and it was destroying, if you didn’t get help it was destroying your life. So, the solution really was to get doctors who understood pain, were interested in pain, were interested in helping you restore your life and patients working together to really just bring about change that would help patients in the long run.

Paul Evans: How revolutionary was that Andrew?

Andrew Baranowski: Well actually when you started that question before you actually specifically asked Heather. I was thinking to myself, well I sort of was a junior doctor in 1984 and that’s when I got involved with pain and I was thinking well, as far as I was concerned I was always working with individuals living with pain. Although that terminology has become much more common now as a doctor and the reason I got involved because I was working on the chest cancer wards and slowly [inaudible] just being developed and it was interesting with people didn’t really know how to use the medication and things haven’t changed much in some ways.

That’s why I got involved because I said well actually we’ve got people here living with pain. There’s a particular group of people who were potentially dying in pain as well and so for me, I’ve always seen it in that way but if you look at how things are talked about now days, there is a much stronger group and that’s what the British Pain Society represents is the multidisciplinary pain teams and is the only society that has the mandate to do that, because actually our membership is of psychologists that you’ve alluded to as well as pain management physiotherapists which help with the physical disability side of it as well as the pain [inaudible], we work as a group and I did my MD thesis and my research [inaudible], in fact the history from when Sir Michael was telling his story, I was sort of being locked into the next stage really which was understanding the neurological mechanisms for why people like Heather have nerve pain and why when you do an epidural why the psychological things switch on these pain memories and so on.

So, that was the research and that was in the 1990’s, so, having trained as anaesthetist. Which was the only way to become a pain doctor, guaranteed was you had to train as an anaesthetist. So, I did all my higher qualifications, anaesthesia and then after about four years of being a consultant I gave up anaesthetics and became full time in pain medicine and then from an early stage I was a part of the British Pain Society. I can remember the first meeting, so, I was always involved in that culture of working with people living with pain rather than people we treat with pain.

Michael Bond: There is an interesting point that came to mind about pain, what is pain? And most people say it is a symptom of something, but, there was a big argument in the early 1990’s that went on right up to WHO about pain as an illness. Pain itself can be an illness, WHO wouldn’t accept that for a long time, eventually they did. So, it is now accepted that pain need not be a symptom of something else. It can arise [Inaudible] as really a malfunction of the nervous system, if you like, in one way or another. You might say well it’s just a symptom of the malfunction of a system. But, that’s not quite really what it means.

Paul Evans: Heather as a person with pain and driving force of Pain Concern what difference would that make?

Heather Wallace: Well, you’ve got something real, so it helps counter that disbelief because when you’re producing pain and you haven’t got the tumour or whatever the doctor can see and investigate then you’re rather left wondering what’s wrong with you. So, I think it’s about being believed and also being able to come to terms and to a sense of peace that you don’t have to be searching for a diagnoses anymore and that’s really helpful because that allows you the energy to actually start dealing with the problem that you’ve got living with what’s effective and you have to learn it’s incurable and I think that’s another stage of difficulty, but at least you know what you’ve got to deal with.

Michael Bond: I think one of the points really comes out of those comments is that often patients would turn up at turn up at the clinic saying and people say it’s all in my head. What’s really wrong, it’s really not a diagnosis. It’s a doctor who doesn’t really understand what we’ve just been talking about, that is that the pain could be a disorder in its own right. I don’t think that has completely filtered through. It takes me on another step to an issue that we have still to solve and that’s the teaching of medical students about pain. I think they are still very poorly educated.

Andrew Baranowski: The Faculty of Pain Medicine which is part of the Royal College [Inaudible], they have this, they now have [Inaudible] into a number of universities, where they’re educating students, but the general sort of quote is that actually medical students get less training in pain medicine than vets do.

Michael Bond: Yes, that’s right. It’s true.

Andrew Baranowski: I think that is changing, but, building on what Heather has said as well, I think providing the patient is open to it. One of the most rewarding things that they find, by coming to a clinic such as the one I run, is actually an explanation and we can explain and sometimes yes you have to say, I don’t understand that, but, actually some really weird and wonderful symptoms that patients have, you can quite often explain them in terms of the function of the nervous system.

So, if you look at associations and conditions, patients with bladder pain syndrome often have widespread muscular [Inaudible] type symptoms. They also have weird things like low thyroid function and dry eyes which are related to, because the nervous system controls the immune systems. So, they get auto immune disorder type problems which cause strange sensations which are nothing to do with the main focus the pain which may be in [Inaudible] and so on are actually, you know when I started as a consultant and I was asked to see pelvic pain patients, I could understand all these weird and wonderful things. I’d say to patients, “well actually you’re not as crazy as you think.” So that’s some of these things actually do have a basis and where as maybe I can’t explain everything, I can explain a lot of things which other doctors have actually labelled you in some way as being a…

Michael Bond: Labelled is the word.

Andrew Baranowski: I hate labels.

Michael Bond: And you have really, from what you have said, pointed that out.

Heather Wallace: Yes.

Michael Bond: That’s how you were treated for.

Heather Wallace: Oh, yes.

Michael Bond: It’s quite a long time.

Heather Wallace: It was so destructive for me because, you know, that self-doubt, self-blame. It was quite a burden for me and there was no answer and you had to… because I was young with pain, you soon learnt you lost your friends if you moaned about this. So, you were really stuck.

Andrew Baranowski: Following on from that, the World Health Authority, they’re now looking at their classification system and in the ICD 11 are next classification system. There will be pain as a condition in the classification. So, we’ll now be separate to that. The other thing which I sometimes upset my neurologist with, which is explain what you’re talking about as pain as a symptom versus pain as a condition.

Coming back to your story about the epileptic in a sense. Epilepsy is a condition and fitting, even though my neurologist doesn’t like the term, fitting is like the symptom as it were and you can immediately see that there are two things. But, the problem with pain, is pain the term can describe a symptom and it can describe the condition and that’s been one of the problems. I don’t think there’s anyway around that. I can’t think of a different term that we would use.

So, we’re slightly stuck with that. But, we need to separate them out in the same way as you might say were an epileptic fit, the fitting is the symptom, where as the condition is epilepsy and in some cases there maybe underlying cause like a tumour. Like you can understand in another case is the epilepsy maybe a neurological functional disorder.

Michael Bond: Just going back to the lady who had seizures or fits. The reason she had them was because we didn’t realise that she was taking large doses of barbiturates and she didn’t get anyway and she was admitted and it was in effect, the fits were a symptom of barbiturate withdrawal.

Andrew Baranowski: And that again raises the issue about the harm that we can do by treating the symptom, rather than treating the patient as a whole. So, we’re now obviously going into these areas where a lot of the things are patients that have complained about a lot of the symptoms that actually generated by the intervention, where they’ve been medically intervention or whatever. I think all interventions; even psychological ones have risks that we need to be aware of.

Michael Bond: Well you’re changing the system, with psychological treatment your changing the system deliberately.

Paul Evans: So, what we were saying is that the patient, the person with pain is so important, what involvement does a person in pain have within the system if you like.

Andrew Baranowski: So, there’s certain separate patient agencies, but, then within the British Pain Society we have the patient liaison committee and I think what is significant about that is also been the patient reference groups we’re linked into some six other individuals. So, that group can help inform the professionals and perhaps Heather would like to talk a bit about her experience in that.

Heather Wallace: Well, it was Sir Michael who took the initiative to say you’d like the society to look into setting up a patient liaison group. So, I think we spent quite a few months working on that. I can’t remember [inaudible]

Michael Bond: Mrs [Gaffin] became the first chairman.

Heather Wallace: And indeed I still worked with her, she’s a trustee now, of Pain Concern So, we’ve formed a long continuous relationship and in the initial days we had to tread very carefully because we were breaking new ground and a lot of health care professionals did not feel that there was a role for patients within a professional society and I think we succeeded in that because we wouldn’t not to threatening that was what we aimed to achieve so that we would become accepted and that has happened and I think now, the society would simply not be without.

Andrew Baranowski: [Inaudible] And in fact I would like, I’ve got my own ideas about further developing that and I don’t know Heather if you’ve got any thoughts that you’d like to give me, any suggestions about how you feel that patients should be more involved.

Heather Wallace: I think closer cooperation, I think pain world is so small and so vulnerable, compared to the big conditions, cancer and what nots out there, which are very worthy, very important, but, pain is also important to people’s quality of life and I think it is that quality of life we’re trying to restore. So, coming together will make us more powerful.

Andrew Baranowski: But, I think also you’re slightly belittling or downgrading the level, the problem because, you know the national pain [inaudible] that living with pain, your quality of life can be worse, not everyone, but, can be worse than living with any other condition and if we also take on board actually about half the population over the age of 50, have chronic or pain, persistent pain lasting for more than three months at a time.

Then, actually it’s a big problem, but, it is not maybe if I dare use the word, as sexy as some of the more emotive type of things. One of the things has been suggested and I’ve been dwelling about and may happen due to my presidency, depending on other people’s views and politics would be to expand the [Inaudible] group to maybe friends of the British Pain Society.

Change that terminology would be that you would have the professional section but then you would have the friends of the society as well as the patient liaison committee which would be the direct body responsible for coordinating the viewpoint of the patients. I’m slightly looking at maybe strengthening the relationship with the patients and maybe it’s quite nice to have to have in this room both Sir Michael and myself and yourself.

Heather Wallace: I think policy needs to be strengthened and that’s where you do need to bring people together but there is chronic pain policy coalition really has a really important role to play in this and getting parliamentarians on board, getting the Department of Health on board and getting clinical guidelines adopted perhaps voluntarily but just mandatory, this is how you treat pain.

Andrew Baranowski: I strongly agree with you, that’s why we set up the coalition which is a group, we meet every four, five times a year. Which is the Chronic Pain Policy Coalition, the Faculty of Pain Medicine of the Royal College Anaesthetists, The British Pain Society and because of its… the politics around it, the [Inaudible] group is co-opted to that. Patients on that have been represented through the BPS and they’re ongoing conversations as to whether or not they should be a direct patient agency on that other than through the BPS at the moment and there is an argument for strength in that I think because you say working together is key, if we’re fragmented then we won’t survive.

Paul Evans: I’m very conscious of the time. Can we just finish off, firstly congratulations on 50 years of The British Pain Society. I think we know where you started and where you are now, well where we are now because patients are persons with pain and we’re part of the team. Where would we like to be in the future?

Andrew Baranowski: I think one of my driving forces before I became president of this society, I was chair of The Clinical Reference Group for NHS specialised services and quite aware that there’s a [dirth] of services but we’re also aware that hospitals cannot provide, if you look into… take into account the instance of pain and the figures vary but suffering from pain is quite significant. There’s no way hospitals will be able to take on board all of that, so it comes back to the education is key. So, it really is important that we educate all medical professionals into the complex dynamics of living with pain and then to look at networks of services and that was my real driving force when I was chair of the Clinical Reference Group, was I envisaged that we would have in England [Inaudible] we’d have maybe six specialised services or 12 specialised services, which would work with District General Hospital Services, which would work with community services and we would have a true network.

So, what I would like to see in the next ten years because I think it’s certainly doable in ten years, but it may take 25 or 50 years, is that you have a network of services so that the person living in pain has someone to turn to, they see the right person at the right time, in the right place, so it should be local where possible but obviously the more complex patients may need to go to the more specialised services. So, in terms of the future for provision of services, that’s what I think needs to happen. Much wider education and a much wider ability for the primary community care services to support patients.

Michael Bond: I know that the other dimension is of course educating the public which is what Pain Concern is all about. They need to be educated over and above the doctors.

Andrew Baranowski: So, that brings us to the British Pain Society in a sense and when I became president, with all the problems that the society is navigating at the moment, which we’re also navigating in one way or the other with current politics, is what is the role of society and we’ve looked at our values, we’ve looked at our mandate and so on and I think raising awareness of pain, [Inaudible] the big thing that we’re launching at this 50th anniversary is our national awareness campaign and we’ve had a number of meetings about that, it’s taken three or four years to get to where we are.

At the moment we’ve now got the posters which I hope that all those living with pain will share on social media to raise the awareness. Each poster has a poignant point. It sort of makes it clear statement about something to do with a living, suffering of chronic pain and so on and it covers war veterans, it covers women, it covers children, it covers all ethnicities and specific problems and so on and that will develop.

So, that will be a part of our education problem, raising awareness but also on the back that we’re raising awareness of what the British Pain Society does through its membership so the British Pain Society supports its members, to actually provide services for those living with pain. There’s no doubt we have to accept that we need to have financial responsibility now days and so I’m hoping that that awareness campaign will also bring in more money because the British Pain Society has done over the past 10, 20 years particularly and Sir Michael Bond has been involved more recently than when he was president originally and see’s the huge amount of work that’s now done with government, with [Nice], with Royal Colleges, with patient support groups.

All of which we can’t do without money and industry is shrinking in terms of what it’s providing and so, where would I like to see the British Pain Society. I’d like to see independent of industry, financially so that we can act with financial stability through raising awareness of what we do to support living with pain. So that we’re in a position to actually continue drawing up guidelines, steering agencies such as [Nice] and the government and so on to try and provide that network of services that sort of support which patients need.

Heather Wallace: Public awareness is really important, I mean there has been initiative and indeed there was a declaration in Montreal a few years ago. That pain treatment, pain assessment and treatment is actually a basic human right.

Michael Bond: That’s right.

Heather Wallace: And it would be wonderful to have that culture throughout and indeed the focus from treating the complex pain patient, to actually moving towards prevention of that occurring in the first place and I think science is moving that way, not convinced you’re there yet.

Andrew Baranowski: Only an education and understanding will prevent a lot of [Inaudible] and one of the things that was interesting when I was chair of the Clinical Reference Group is that we managed to get pain management as being a cornerstone service, therefore if you have a specialised services for kidneys or brains or whatever it may be, you can’t have a service without a pain service linked to you, but, I agree completely with Heather, is that the more that we sort of [Inaudible] away at this, the more likely we can prevent [Inaudible] by actually providing earlier support.

Michael Bond: And that is becoming increasingly relevant as one of them, the population grows older because there are increasing infirmities of all kinds amongst the elderly and if we can anticipate some of those, we may be able to reduce them.


Contributors:

  • Dr Andrew Baranowski, British Pain Society President
  • Professor Sir Michael Bond, founding member and former president of the BPS
  • Heather Wallace, Pain Concern Chair and BPS honorary member.

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